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IloveHistory
01-09-2007, 12:55 PM
Hi!

I have been having the most awful sensations recently and I know that they sound weird, but please bear with me!

I have always suffered from Orthostatic Hypotension (low blood pressure), where I faint if I stand up too quickly, but this is very different!

I get these strange sensations where I feel as if I am floating and lying down doesn't seem to help very much! :( My vision tends to go blurry, I get a headache and I feel very sick and dehydrated. Sometimes, I also feel as if I am not really in my body, as if I wasn't there and it's a really scary feeling! :(

At other times, I experience a debilitating bout of EXTREME nausea, where my vision also goes funny and I get a headache. I feel as though I desperately need to lie down, but when I do, I don't feel any better! :( It is the most FRUSTRATING thing that I have ever experienced and often lasts for an hour or more! :cry: Other people tell me that I look very strange while I am experiencing these sensations and that I go deathly pale.

After these episodes, I often experience these strange, tingling sensations in my hands, which are VERY painful, but only last for a few minutes. Today, I had a similar experience, but it was my left thigh that began to tingle and sting! :(

I have Epilepsy and at first, I thought that these might be auras (warnings), but I have never had a seizure after these episodes, so I doubt that they are connected. They are also not typical of the auras that I get before a migraine comes on and although these sensations cause me to have an extreme headache, they definitely do not cause migraines.

I am also having terrible problems with my electrolytes, which are continuously very low, even when I am not vomitting or don't have Diarrhea or Dysentery and I drink a lot of water. It is becoming a terrible problem, especially the Hypokalaemia (low Potassium level), but I saw my Urologist today and he confirmed that my kidneys are not causing the problem. This is worrying me because I feel that this electrolyte imbalance may be at least partially responsible for these strange sensations and electrolyte imbalances are not good for people with Epilepsy because they often induce seizures. :( I was paralysed for three days a few weeks ago and we feel that the Hypokalaemia was most likely responsible. :(

I am going to see my Neurologist on Wednesday after School (I am sixteen) and am going to speak to him about these strange sensations because I feel that this is a Neurological problem.

I was just wondering if anyone else has gone through/is going through a similar problem or whether anyone has any advice for me?

Thanks and Keep Well! :)

MARYCAIN
01-13-2007, 09:57 AM
Have you doctors discussed whether your lupus may be affecting your central nervous system? In the early stages of my CNS involvement, I often had strange spells of vertigo, or feeling really disoriented, and having strange visual things like lightning flashes, but they didn't cause a headache or seizure. The doctors finally detwermined that it was lupus-related, and that I was having small spasms of the arteries that supply blood flow to the brain, like a Reynauds phenomenon of the brain. So if these episodes continue, you might ask your neurologist about the possibility of CNS lupus. I would also wonder if maybe you're drinking too much water, and diluting the electrolytes in your blood. Water is like anything else, you can have too much of a good thing, and if you're overhydrated, you can literally flush the electrolytes right out of your system. Sweating a lot can also deplete your body of electrolytes. So maybe keep track of how much water you are drinking every day, and substitute veggie juice or a sports drink occasionally, and see if that helps any.

IloveHistory
01-13-2007, 11:38 PM
Hi Marycain!

Thanks SO much for the advice! I am seeing my Neurologist on Wednesday after school and will be sure to speak to him about it.

Keep well! :)

IloveHistory
01-18-2007, 07:02 AM
Hi!

I am really angry with my Neurologist at the moment!

First of all, I told him that the Epilim (Depakene in the U.S.A; Convulex in the U.K.) is working very, very well. He said "That's very interesting because they often use Epilim to treat Bipolar Disorder and it's probably a good thing that you are on it then, considering the fact that your mother suffers from depression." EXCUSE ME? Is he trying to insinuate that I have Bipolar Disorder?! I DO NOT HAVE BIPOLAR DISORDER! :mad: :mad: :mad: :mad: :mad: :mad: :mad: :mad: :mad: He seems insistent on trying to find something psychologically wrong with me! :mad: He is NOT a Psychiatrist, nor a Psychologist for that matter, and my Psychiatrist has assured him that there is NOTHING wrong with me! My mother is a Psychologist and she would DEFINITELY notice if there was something wrong with me! I don't even suffer from mild depression, never mind Bipolar Disorder! I am practically NEVER depressed! I don't even get stressed that often! :mad:

Then, I told him about the strange sensations that I experience. He totally shrugged the tingling, etc. off and when I told him that sometimes it lasts for an hour in my hands, he gave me such a disbelieving look and said "Come on. Think about it!". I would NEVER lie or exaggerate about something like that! My other doctors don't have a problem hearing about this, so why does he? :mad:

Then, we discussed the fact that I'm tactile (It was really bad when I was younger; I wouldn't wear shoes, socks, jerseys, scarfs, cardigans, shorts, pants, etc.! I am still unable to wear pants and cannot wear anything tight). He then said: "Yes, well that's psychosomatic, you know." My mother and I have always thought that tactility was NEUROLOGICAL; skin sensations occur from your Parietal Lobe and I always thought that this meant that something had gone wrong in that lobe of my brain. I'm sorry, but you CANNOT "pop" out of your mother's stomach with a Psychosomatic Disorder, END OF STORY! :mad:

Then, my mother and I were telling him about the Gynaecologist and I told him about my back problems and asked whether he thought that Physiotherapy would be a good idea for me again (I stopped it two years ago and my Neurologist wants me to do Occupational Therapy again for my Fine Motor Co-Ordination Problems and my Tactility.). He then said: "You can't have everything wrong with you, you know!" :cry: OH MY WORD! When you go to a doctor, you go to complain about something that is wrong and to ask for help! I NEVER said that I had everything; there are people five million times worse off than me and I am fully aware of that and thank God everyday for what he does for me! :cry:

Then, my Neurologist keeps telling me that I'm "too suggestive" and he was convinced the last time that I saw him that I read things and then my mind creates them and so I need to see a Psychiatrist and do Cognitive Behavioural Therapy! :mad: :mad: :mad: :mad: :mad: :mad: :mad: :cry: :cry: I am NOT suggestive and there is NOTHING psychologically wrong with me! Why can't he just accept that? I can't take this anymore! :cry: :cry: :cry: :cry:

MARYCAIN
01-18-2007, 03:51 PM
I'm sorry you are having to experience this kind of attitude at such a young age. I know it's not much consolation to you at this point, but many women (and men) with lupus find their symptoms treated as hysterical, hypochondriac, or psychosomatic. Lupus can cause such a wide range of different and seemingly unrelated symptoms that many doctors think first about a psychological explanation instead of a physical one. And unfortunately, many doctors let their prejudices and preconceptions affect the way they treat their patients, and this is especially true when the patient is a teenage female. But you are a very bright girl, and you can deal with this problem by being assertive and firm with your doctor. It might help if your mom is not in the exam room or consulting room with you - this forces your doctors to deal with you on a more adult level. When the doctor makes comments, you can politely but firmly say something like "Excuse me, but I've seen a psychiatrist. He thinks these symptoms are physical, not psychological. If you disagree with him, tell me why. Otherwise, please try to help with these problems instead of treating me like a hysterical teenager. If you don't think you can help me, refer me to someone who can." Be calm, but forceful. Usually, when you call a doctor on his attitude, it improves. But please don't take this kind of behavior personally - it has happened to many lupus patients, and you just have to respond to it when it happens.

IloveHistory
01-19-2007, 06:08 AM
Hi Marycain!

Thanks again for your wonderful advice; it has really helped to calm me down. :)

I always go to see my doctors by myself, but my mother would come in with me when I went to see my Neurologist because of the important decisions involved in Epilepsy medication, etc. However, my mother can't stand my Neurologist and has now refused to ever come in with me again. I used to like him very much and in a way, I still do, but he just says some very stupid, unfair and annoying things. He is a brilliant Neurologist, but he knows it too and is a bit too arrogant for my mother's liking. The arrogance, I can handle, the attitude, I can't!

You're right, Marycain! Next time, if he brings up the psychological issue again, I will speak to him very firmly about it.

I just found out that Tactile Defensiveness is ONE HUNDRED PERCENT NEUROLOGICAL and is often treated by a Neuropsychiatrist because a lot of people think that the problem is psychological, when actually, there's usually NO psychological involvement WHATSOEVER. Infact, Tactile Defensiveness often co-exists with other Neurological problems, e.g. A.D.D./A.D.H.D.; Fine Motor Co-Ordination Problems (which I have); Gross Motor Co-Ordination Problems; Austism; Asperger's Syndrome, etc. Tactile Defensiveness involves problems with the patient's nerves and their nerves send messages of extreme pain or discomfort to their brain, when certain substances touch the person's skin. SO THERE, Dr! :wink:

Keep well! :)

MARYCAIN
01-19-2007, 08:22 AM
Good for you - I'm proud of the way you are handling this.

One other thing you might want to take into account - some epilepsy medications (including Epilim) can themselves cause paresthesias (strange tingling sensations) and heightened sensitivity to touch and pressure. So it's possible that the side effects of your medications might be aggravating your-preexisting sensitivity to touch. Have you noticed any changes in your skin sensitivity since you changed your meds?

IloveHistory
01-19-2007, 11:26 AM
Thanks, Marycain! :)

I did Occupational Therapy for five years when I was younger (Pre-Grade One to Grade Four) and it really did help with the Fine Motor Co-Ordination Problems and the Tactile Defensiveness (They used to cover me with Baby Powder and wrap me in a hammock! :wink:). My Neurologist wants me to do Occupational Therapy again and I am perfectly willing because I know that it definitely does help.

No, I haven't really noticed any change since I changed my meds, to be perfectly honest. I'm just really worried about the strange sensations that I experience because they're SO painful! :cry: I have a very high pain tolerance (When I was eleven, I had a very bad accident where I tripped, flew through the air and landed on my chin, with the rest of my body coming crashing down. I knocked my front two adult teeth clean out of my mouth and broke another nine teeth. I also broke my nose, dislocated my left elbow, cut and grazed every spare inch of my body and swallowed so much blood from my mouth that I ended up bringing it all up again! I then did my Ballet Examination an hour later, having only seen the School Nurse!), so I would never complain or even mention a word unless the pain was REALLY bad! :cry: I just don't understand why he doesn't believe/want to believe what I'm saying and why he just shrugs it off? :? :cry: None of my other doctors had a problem with it! I love my Paediatrician/Paediatric Cardiologist because he always believes me and never doubts anything that I say. He told my Psychiatrist that he likes me a lot and that he believes what I tell him, which is one of the reasons why we have a special arrangement with him (technically, I am too old for a Paediatrician), as well as the fact that I have very minor heart and blood pressure problems. He is just SO thorough: He always listens to my chest; does my peak flow; looks at my throat, my nose, my eyes and my ears; checks the fluid balance of my ears; looks for any swollen lymph nodes; checks my reflexes; takes a look at the flexibility and inflammation of my joints; examines my spine; feels my abdomen; checks my weight; takes my temperature; checks my urine; takes my blood pressure twice; and lastly, he ALWAYS listens to my heart and takes my pulse rate. If he's worried or concerned at all, he does an E.C.G. Most importantly though: He LISTENS! He actually listens and makes notes of everything, checks my medication with me and asks about any problems there. He is prepared to listen to me if I have any concerns or problems with any of my other doctors, he will always admit if he is unsure or does not know about anything and is prepared to refer me to brilliant specialists, if necessary. It was on his insistence that I saw the Gynaecologist. Otherwise, we would never know about the problems that I have there! He always asks how school is going and encourages me to become a Neurosurgeon; he is supportive when I tell him about any emotional bullying; he teases me, laughs with me and cheers me up (actually, he told my Psychiatrist that I make him laugh?! :? :lol:); he does not prescribe meds unless it's really necessary and always ASKS if it's alright for him to take some blood (he's good with that too and checks things which are important, but which most doctors don't seem to think about). I am unable to take Beta Blockers because of my Asthma, so he taught me some strategies which I can use to try and stop bad heart palpitations. He spoke to my mother about how to take my pulse correctly and about what to do if my heart palpitations get much worse quickly, will not stop or if my heartbeat becomes irregular and will not correct itself after a few hours. My mother discussed this with my teachers and my closest friends also know what to do. He encouraged me to keep a health diary where I can record any worries, concerns, symptoms, doctor's appointments, scans, etc. and told me to bring it along whenever I see a doctor. He makes me record my bowel movements (sorry! :oops:) and how many times I urinate every day. He also makes me record whenever I have a heart palpitation, what I was doing before the palpitation, what I had eaten, approximately what my pulse rate was, what it felt like, how long it lasted, how I felt afterwards and whether I felt that my blood pressure was too low. He spoke to my mother about what she/my friends/my teachers must do when I faint; when it's necessary to call him with regard to any vasovagal problems and he gave me his card to give to the school receptionist, incase they need to contact him for any reason.

It's so nice to have a doctor like that! :)

I'm sorry this message is so long; you must be bored stiff and have probably fallen asleep by now! :sleeping: :wink:

Keep well! :)

MARYCAIN
01-19-2007, 12:47 PM
You are lucky to have that one really good doctor, doctors like that, unfortunately, are the exception rather than the rule. I hope you will be able to keep seeing him even as you do get older.

IloveHistory
01-22-2007, 09:42 AM
Hi!

I'm sorry about this, but I'm actually quite worried! :(

Last night, I was lying in my bed, trying to fall asleep, when suddenly, my lower calf began to "pop"! :?: It was scary, odd and quite painful! It stopped and started twice and I put my hand on my lower calf and could actually feel the "popping"! It was awful! When it had stopped, I got up to go to the bathroom and while I was there, the "popping" began again and this time I could actually SEE something bulging in and out of my lower calf! It was absolutely terrifying!

I have had this before, but never this bad and never lasting this long! It went on for about fifteen minutes! :!: I had it in my back for approximately three minutes a week or so ago and I have also had it in my left thigh, where my thigh just started tingling and moving very quickly, up and down.

Today, I was at School, holding my Physical Sciences file, when suddenly, my hands began to shake uncontrollably. I couldn't seem to stop them and it wasn't caused by cold (we are having a heat wave here!) or worry because I was definitely NOT nervous (I am practically NEVER nervous) and there was nothing to be nervous or worried about?

I don't know what to do because my Neurologist probably won't listen to me?! :cry: :x However, I think that my nerves are going crazy! :(

I suppose that I will just have to speak to my Paediatrician/Paediatric Cardiologist about it when I see him again.

Keep well! :)

MARYCAIN
01-22-2007, 09:59 AM
It sounds like you could be experiencing fasciculations, which are a kind of muscle twitch or spasm you can actually see under the skin. They can hurt, and look really frightening - they often happen in the calf of the leg, the hands, and the eyelids. There are many different factors that can trigger them, including several medications, electrolyte imbalances, vitamin deficiencies, and other medical conditions. So that could be part of what's happening. Although it can be neurological, it doesn't sound like your neurologist has been very helpful in the past, so you might have better luck talking to your other docs. You might want to look at the meds you are taking to see if this is listed as a side effect for any of them.

IloveHistory
01-22-2007, 11:01 AM
Hi!

Thanks SO much for the wonderful information and advice, as always! :D

None of my medications appear to list this as a side effect, but my Asthma pump, Ventolin, can apparently cause this. However, surely that would have begun long ago, as I have been on Ventolin for a while now and am actually using it less recently than I was, since I started on the Inflammide Novolizer (Cortisone Inhaler)?

I will have to speak to my Paediatrician/Paediatric Cardiologist about it when I see him again. Unfortunately, this might be soon, as I am not feeling very well at the moment - terrible headache, muscle spasms, TERRIBLE shoulder pain (I could not even dress myself on Sunday morning for Church because of this - please don't tell me that I am getting Arthritis in my shoulders! :cry:), lower backache, more fatigue than usual :!: ,sore throat, colon problems, strange sensations, sore eyes, general "yuck" feeling... :cry:

I'm really sorry for complaining, but I just feel AWFUL! There is no other way to describe it... :(

Keep well! :)

IloveHistory
01-26-2007, 03:48 PM
Hi!

W.r.t. what I posted earlier on the "popping" sensations: I have now noticed that they only occur on the left side of my body - left lower calf, left thigh, left buttock (sorry! :oops:), left side of back (underneath the ribs), left side of neck. Although my Epilepsy is mainly Temporal Lobe, I also have Right Frontal Lobe Epilepsy, which causes weird, random arm movements in my left arm. Do you think that these "popping" sensations on the left side of my body could have anything to do with the problems in my Right Frontal Lobe?

They usually occur as isolated events, but I had a tonic-clonic (grand mal) seizure on Thursday and after the seizure, these "popping" sensations began to alternate all over the left side of my body. As soon as they stopped in my lower calf, they would start in my left buttock (sorry! :oops:) and so on and so forth...

Keep well! :)

IloveHistory
02-10-2007, 04:12 PM
Hi!

Marycain, you were right, as usual! :wink: :D I spoke to my Rheumatologist about the "popping" sensations on Wednesday and both he and my Paediatrician/Paediatric Cardiologist say that they are fasciculations. My Rheumatologist says that they're generally nothing to worry about and that a lot of people get them, but that I should mention them to my Neurologist, anyway.

W.r.t. all of these strange neurological things: suddenly, I keep losing control of my eyes and they wander hysterically all over the room! :( Plus, recently, I have been experiencing these very odd seizures. I get absolutely no aura, whatsoever (which is VERY unusual for me). :( Basically, I feel as if someone has chucked a GIGANTIC and VERY heavy ball at my chest. If I'm sitting, I get flung back in my chair and my hands go up like a Mexican wave! It always happens three times, one after the other, but at least I don't really get hurt, it's just a big shock. However, the problem comes when I'm standing or walking. I get flung into the nearest wall or surface and my body continues to smash itself into the wall/surface three times, one after the other, until I collapse down the wall and onto the floor. This is when I really hurt myself. If this continues, I'm actually going to break my shoulders! These seizures leave me with huge bruises and they REALLY hurt! Plus, they're terrifying and my consciousness is not at all impaired, making the terror even worse! :cry: I spoke to my Paediatrician/Paediatric Cardiologist about it, but he said that with strange seizures like this, I must talk to my Neurologist because this is out of his field. I am scared to talk to my Neurologist about this though because the last time that I had a weird seizure he had an absolute "freak accident" and asked me how my seizures could possibly have changed in the few weeks since I had last seen him?! :mad: If he says this again, I will say: "Look, Dr, I really don't know what is going on here either, but it's NOT psychological. To be honest, I don't particularly care what your textbook says because patients are not textbooks and sometimes, you just have to use your intuition."

Now, I keep experiencing sensations where my skin is "crawling" and it is the most awful sensation ever! :(

Also, a little while ago, I had this problem where I couldn't stop dropping things and I am NOT anywhere near clumsy! It was a short while after I had been diagnosed with Epilepsy, but then it went away. Now, it seems to have come back! :(

I just don't know what is going on here! :? :cry: Do you have any idea what could be going on?

Keep well! :)

MARYCAIN
02-10-2007, 06:16 PM
If you are completely conscious during these episodes, they are probably not seizures, which would explain why your anti-seizure meds don't seem to be preventing them. It sounds like you might be experiencing some type of movement disorder - there are many types of movement disorders - some genetic and some acquired, like chorea. Certain types of staph infections, and illnesses like rheumatic fever, can cause an acquired chorea that lasts for weeks or months, even after the infection goes away. The problem could be neurological, or could be related to an inborn metabolic disorder like Wilson disease (where the body is unable to metabolize copper). Many metabolic diseases can cause strange neurological symptoms. So these are all things your neurologist needs to consider. If you don't seem to have much luck communicating with your neurologist, you might ask your pediatrician about a consult with someone who specializes in movement disorders, just to see what might be going on. I know these episodes must be frightening - be super careful about doing anything where you could be badly hurt, like riding a bicycle. Try to protect your head as much as you can, you might want to consider wearing a protective hat or seizure helmet until your doctors figure out what's going on. Have you tried keeping a journal of when these episodes occur, to see if there any kind of pattern, or any posible triggers like what you were doing beforehand? The more information you can provide, the better the chances your doctors can solve the problem. So I would definitely recommend keeping a log or a diary of all these incidents. I hope you are able to get some answers soon.

IloveHistory
02-11-2007, 06:19 AM
Hi Marycain!

Thanks VERY much for the detailed information! :D

Yes, I always keep track of my seizures in my 'healthy diary' and on my seizure calendar.

The only thing with the seizures and impaired consciousness, is that I also experience strange Frontal Lobe seizures where I lose control of my left arm, but my consciousness is not at all impaired. These started the night before I saw my Neurologist for the first time, so I know that your Frontal Lobe can produce seizures where your consciousness is not impaired, e.g. in Myoclonic Seizures your consciousness is often preserved, which is why I think that this may be a Myoclonic seizure? My weird Frontal Lobe seizures always wake me up at exactly 02:30 a.m., which is really weird and freaky! :? Sometimes, I will have more after the first one, but the first one will always start at 02:30 a.m.! :shock:

However, I was pretty ill when these seizures started, so perhaps that's what is triggering them? Do you know if Celiac Disease could cause this? Although, I am proud to say :wink:, I haven't so much as touched gluten for three months! :D They know that I have an endocrine disorder, they're just trying to find it! My Gynaecologist wanted to start right at the top, so she sent off bloods to test my Pituitary Gland function and my Thyroid function, but they both came out 100%, which is great! :D However, most of my doctors are pretty sure that there is something wrong with my Adrenal Glands, so that's where we are heading next. If there is a problem here, could this be causing these strange movements?

Keep well! :)

MARYCAIN
02-11-2007, 08:51 AM
Sorry, I left a word out in my initial response - i meant to say that you were probably not having "typical" seizures (tonic-clonic, which could cause the violent muscle contractions). You are perfectly correct that you can have seizures without any loss of consciousness. Some myoclonic seizures can cause the violent muscle contractions, but since they typically affect the arms and face, I'm not sure they would account for the chest pain, especially since your seizures had been well-controlled by your meds previously. Have you had repeat EEG since these new episodes started? Are there any differences in the patterns?

Adrenal gland problems would cause different symptoms depending on whether the glands were underactive, or hyperactive. Seizures would be possible, but probably not the coordination and motor problems you are describing - with underactive adrenal function, extreme weakness, nausea, etc. are very pronounced. If an endocrine order is suspected, you really need to be seen by an endocrinologist - the endocrine system is so complex that most non-specialists just don't enough familiarity to deal with it.

Keep us posted!

IloveHistory
02-11-2007, 09:39 AM
Hi Marycain!

No, I haven't had another E.E.G. done - I've only had one done fifteen minutes before I saw my Neurologist for the first time (literally, he won't see you until you've had an E.E.G.) and then I had a Sleep Study E.E.G. one week later as a diagnostic test. Both were quite clear and the activity was fairly diffuse, coming from three different lobes, which is apparently indicative of virus/auto-immune caused Epilepsy because it's not focal.

Well, I thought that my seizures were well-controlled. The tonic-clonic ones definitely are; I've only had two since I switched to Epilim - one on the night when it was changed (my body was probably just adjusting to the new med.) and another one about two weeks ago when I was really ill and we were having a heat wave. The Frontal Lobe Seizures are also very well-controlled. However, according to my friend who sits directly behind me in Physics, I am frequently having Complex Partial Seizures. I tend to rub my face excessively during these episodes, chew things that aren't there and swallow excessively. She actually didn't know that I had Epilepsy, but spoke to me about it the other day because the last tonic-clonic seizure that I had was during Physics and I was moved to the store-room, so she wanted to know if I was alright and what had happened. She asked me what type of seizures I have and what happens and when I told her about what I do when I have Complex Partial Seizures, she said: "Oh my word! But you're doing that all the time! I've seen you, in Physics, rubbing your face all the time and chewing! I thought that you were just sucking a throat sweet or something, so I didn't say anything and I thought that you kept rubbing your face so erratically because you were agitated and hot!" I was worried that I was still having Complex Partial Seizures myself because the other day, in Physics, we were working through a complex problem on the board. The next thing I knew, the rest of the class was gathered around the work bench right at the back of the classroom and my teacher said: "Are you going to come and join us?" It freaked me out because one minute, I was working through a problem, the next minute I was sitting all alone and the problem on the board had been completed! :shock:

I have had a Myoclonic seizure before, where both of my arms shot out in a straight line alongside my body (this was the episode where my Neurologist had a "freak accident" and told me that I "read things and then (my) mind creates them!"). :mad:

I may just have to go and see an Endocrinologist, but we'll see what the Gynaecologist says; she said that I might have to do that.

I'll let you know how it goes...

Thanks SO much for all of the information and keep well! :)

MARYCAIN
02-11-2007, 10:47 AM
Well, you definitely need another EEG done to see if there are any changes - you might be having focal seizures now. If your neurologist isn't willing to order one, ask your rheumatologist or another one of your doctors.

IloveHistory
02-12-2007, 02:45 PM
Hi Marycain

Thanks very much for all of your help and information! :)

My Psychiatrist phoned my mother and I today to let us know that he had met with my Paediatrician/Paediatric Cardiologist and my Neurologist to discuss what has been going on and how they can help me.

I was surprised because according to my Psychiatrist, my Neurologist really likes me and actually takes me very seriously indeed and that it's not a case of him not believing me, it's that he's very concerned about me and is not quite sure exactly what is going on.

They apparently want to try a new approach to my illness because apparently they all realise that I'm "seriously ill" and want to be able to help me as best they can.

My mother and I are meeting with my Psychiatrist at 10:00 a.m. tomorrow to discuss the "new approach", so I will let you know how it goes as soon as I get back! :)

I must admit that my Psychiatrist has been fantastic throughout all of this! :) He lets my mother and I phone him whenever we need to talk and often phones to see how my mother and I are doing. :) He organised a meeting with my vice-headmistress and my headmistress a few weeks ago to sort out work, etc. and my illness. My mother and I are really impressed because my Psychiatrist really shows that he cares. :)

I am sick with Bronchitis again (I know, my mother and I can't believe it either! :shock:) and was sent home from school after having a gigantic Asthma attack in the middle of my History lesson. :( Plus, the malar rash appeared on my face in the early hours of this morning (Monday)! :mad:

I had a very bad experience with a doctor tonight, but will send you a P.M. about it as soon as I finish typing this post. :cry:

Keep well! :)

IloveHistory
02-13-2007, 06:32 AM
Hi Marycain!

I have just come back from my Psychiatrist; it was a really good appointment. :)

My doctors are just really concerned because in the last three months, I have just been "spiralling downward." They are starting to think that the meds may actually be doing more harm than good. :(

My Neurologist is concerned because of the C.N.S. involvement, especially because having seizures originating from three different lobes of your brain is apparently very rare and usually only occurs in conjunction with a serious case of Encephalitis. :shock:

My doctors think that the virus which I caught in Austria is permanently circulating in my blood and has resulted in wide-spread Viraemia, affecting all of my organs, including, most concerning of all, my brain. They also think that my highly allergic body has become allergic to the virus! :? :shock: They know that there is definitely an auto-immune disease going on here, but the virus doesn't seem to have left my body either! This is why they cannot put me on Immunosuppressive drugs; it's just too dangerous because the virus is still around and they're scared that the virus would kill me if we made my immune system any weaker than it already is. :( They know that I have Sjogren's Syndrome and some form of Lupus (they're still wondering whether it is turning systemic or has turned systemic and that they're just not finding it in the blood. Of course, five percent of Lupus patients have negative A.N.A. Tests anyway, so they can't really rule that out yet. For example, one of my mother's friends has Discoid Lupus, but her A.N.A. Test was negative. My stepmother's cousin was diagnosed with S.L.E., even though her A.N.A. Test was negative because she had Arthritis everywhere, Pericarditis, Pleurisy, Kidney Disease (she was on Dialysis), mouth and nose ulcers, a malar rash, fatigue, constant low-grade fever, loss of appetite, Alopecia, Raynaud's Phenomenon, Sjogren's Syndrome, Vasculitis, Antiphospholipid Syndrome and she was photosensitive! :shock:) and they're definitely considering Behcet's Syndrome.

They are considering possibly admitting me to Hospital for two weeks at some stage, where my Paediatrician/Paediatric Cardiologist, my Neurologist and my Psychiatrist will "look after" me. They want to try and taper me off my meds, gradually, to see if it will make a difference. We're not sure what we're going to do with the Anti-Epileptic Drugs yet; I'm seeing my Neurologist in two weeks to discuss all of this. I am seeing my Paediatrician/Paediatric Cardiologist in two weeks on the same day as well and I'm going to ask him if he knows of an Immunologist/Allergist or someone who does Immunotherapy because that would be brilliant for my allergies and I would then be able to stop taking my allergy meds (just the pills; I would still use my nasal spray), which would be wonderful, as anti-histamines are known to cause and worsen fatigue! However, they will still allow me to use my Inflammide Cortisone Inhaler, my Ventolin (Asthma pump), my eye drops (for the Sjogren's Syndrome), my nasal spray, my bulk-forming laxative (it's not a pill or anything, it's more like little seeds, which you swallow with water), my skin creams and my vitamins (High Potency Vitamin B Complex with Biotin and Folic Acid, Vitamin E, Magnesium, Zinc and Omega 3 Fatty Acids). They're hoping that the only pill that I will ever have to chronically take will be my Epilim and possibly, my Zelnorm (although they would preferably like to stop that too, but my colon is like a rock!)

My Paediatrician/Paediatric Cardiologist would like me to see a Nutritionist who will be able to help with the "detox" and with following a strict "diet"; they're hoping that she will be able to help me with all of my food allergies, as I am allergic to gluten (Celiac Disease), seafood (causes Anaphylaxis), fish (causes Anaphylaxis), peanuts (causes Anaphylaxis), onions (causes Anaphylaxis), garlic, yeast, tomatoes, avocado pears, egg whites and jam (don't ask! I have no idea why, but ever since I was five years old, jam has made me vomit like nothing you've ever seen before and I break out in a really weird rash on my face! :?) - yes, I'm being serious! :shock:

While I am in Hospital, if I need a Laparoscopy (to check for and repair, if there is any, Endometriosis) or an Endoscopy, etc. my Psychiatrist said that they will organise that then too.

Well, I feel a lot better now that I know that my Neurologist believes me, etc.! :) I'm so embarrassed though because I wrote a poem about my Epilepsy and my Psychiatrist read it and now he wants to send a copy to my Neurologist (who desperately wants to read it, apparently! :oops:) and my Paediatrician/Paediatric Cardiologist, who is also very keen to read it! :oops: :oops: :oops: :oops: :oops:

Keep well! :)

MARYCAIN
02-13-2007, 07:29 AM
Well, I'm glad they are finally taking your problems seriously and making a concerted effort to get to the bottom of what is wrong. I hope you don't end up having a lengthy hospital stay, but it would be better than the repeated trips to the emergency department.

With your medical history - I am wondering if you have ever been tested for a primary immune deficiency by an immunologist - some of your tendency to get repeated infections could be explained by this. And an immunologist would certainly be helpful in treating your allergies - although you might not be a good candidate for immunotherapy - people who are highly allergic can react to the minute amount of allergen in the injections - it might be more stress than your body can deal with right now. I am wondering if your allergist or pulmonary specialist has every discussed a medication called Singulair (at least in the US - chemical name is Montelukast sodium) with you. It is a leukotriene blocker that can reduce symptoms of both asthma and allergy - because it blocks the action of the cells involved in the symptoms - and might enable you to reduce some of your other asthma and allergy meds, especially the inhaled steroids. Even inhaled steroids can have systemic effects at prolonged doses, and it might helo your immune system recover. I have had a lot of problems with both asthma and allergies in the past. (I share your allergies to shellfish and some seafood, and also have many problems with dreug allergies too) This med cut down on my need for other allergy and asthma meds considerably. So it might be worth discussing with your doctor as an alternative to anti-histamines. It sounds like you also need to talk with an infectious disease specialist about the ongoing problems with the virus in your system to see if anything can be done.

Please us posted on how things develop - and be careful tapering off your meds! Hope everything goes well.

IloveHistory
02-18-2007, 11:46 AM
Hi Marycain!

I am SO sorry that I have been unable to reply before now, but our Internet is not working and I had no way to let you know! :cry: It still isn't working, so I am typing this on my mom's best friend's computer.

Thanks SO much for all of the information! I will be sure to discuss the med. with my doctor.

Unfortunately, there aren't really any Immunologists around here, which is a massive problem, as I'm sure you can imagine! :( I know that it would most likely be very beneficial for me, but what can one do? However, I will be talking to my Paediatrician/Paediatric Cardiologist about whether he knows of one because I think that Red Cross Children's Hospital has one, but I might be a bit too old now. :(

I was actually considering that myself. I recently read about Common Variable Immunodeficiency (C.V.I.D.), so I looked it up on the Internet, but there was very little information. Do you know anything about this condition, by any chance? I have never had my IgA, IgM and IgG levels tested before, although I am going to suggest this to my Paed./Paed. Card. because I think that this is very important. My Psychiatrist was very surprised that I had never had these levels tested...

Keep well! :)

IloveHistory
02-28-2007, 05:23 PM
Hi Marycain!

Wow! The past three days have been hectic...

I went to see my Neurologist on Monday and he was HORRIFIED by all of the weird neurological things that I have been experiencing. So, he told me to stop the Epilim IMMEDIATELY.

He then said that he no longer thinks that I have Epilepsy; he thinks that I have Vasovagal Syncope and that not enough oxygen is reaching my brain, so I am having seizures.

However, I cannot accept this. Firstly, I often experience Todd's Paralysis after Tonic-Clonic seizures. Secondly, I usually wet myself, which is supposed to be fairly uncommon in Vasovagal Syncope. Thirdly, Vasovagal Syncope does not explain the Complex Partial seizures. Fourthly, people are not confused after Vasovagal Syncope episodes.

My mother asked what we must do if I have another seizure. He said that he will send me to the Epileptologist to be monitored on an E.E.G. for a week at the Epilepsy Centre. However, I cannot go now because I cannot afford to and refuse to miss any more school, end of story.

Then, I went to go and take a look at my health diary. I discovered that all of these weird neurological things began almost immediately after I had been prescribed Ethipramine (Imipramine Hydrochloride) for Fibromyalgia. So, I looked up the package insert on the Internet and what I read nearly killed me. :shock:

The package insert stated in BOLD CAPITALS: THIS DRUG IS NOT SUITABLE FOR INDIVIDUALS WITH ANY TYPE OF CONVULSIVE SEIZURE DISORDER. Well, Epilepsy is certainly a CONVULSIVE SEIZURE DISORDER, wouldn't you say? :mad:

I nearly collapsed when I read the side-effects. Firstly, under 'Warnings', it stated that the drug should not be used in individuals with Orthostatic Hypotension (:!:) or any type of heart arrhythmia, including Tachycardia (:!:) and Bradycardia. Then, I read the side-effects: Tremors (:!:), which occur FREQUENTLY; Migraines (:!:); Paresthesia (:!:) and symptoms suggestive of Peripheral Neuropathy; Epileptic Seizures (:!:); Myoclonus and various movement disorders (:!:); Heart Palpitations (:!:); Vasovagal Syncope (:!:); Peripheral Vasospastic Reactions; blood sugar level fluctuations! :shock: :mad: :mad: And these are only side-effects relating to what I have been experiencing! :shock:

I think that my Neurologist thought that I would not have another seizure if he stopped the Anti-Epileptic Drug because the dosage had been very low anyhow (that was my Specialist Physician's fault; she did not obey my Neurologist's dosage instructions) and I had not had very many tonic-clonic seizures recently, but, unfortunately, he was wrong. I had a bad seizure this evening and completely soaked my mother's bed. I have NEVER urinated so much in my entire life; it looked like I had voided an entire litre of urine (honestly, I am not exaggerating)! I was so confused after the seizure that I took the wrong pill (of my contraceptive pills) and could not remember for the life of me whether I had taken my Sertraline or not! :cry: I then forgot what day it was and how to turn the washing machine on! :cry:

So, my mother phoned my Psychiatrist this evening and he told my mother to phone my Neurologist tomorrow. We want to ask him to increase the dosage of my Epilim (and put me back on it) at least until the holidays, when I will be able to go on the E.E.G. monitor for a week. If the drugs do not work or I experience any adverse reactions, I will stop taking them immediately.

My Psychiatrist has changed my Fibromyalgia med. to Sertraline. He always said that he was unhappy with the Ethipramine and so did my Neurologist.

I am seriously depressed about the seizures... :cry: Unless I am put on a higher dose of the Epilepsy meds (I never did stop taking them because I was too frightened), I refuse to go to school and out anywhere or with anyone. I am terrified of Status Epilepticus and keep having nightmares where I enter Status, but no-one will help me! :cry: I CANNOT keep having seizures like this! As it is, I will be unable to take my Learner's License Test (for driving) in September because I have to be seizure-free for an entire year! :cry: I am really upset. I understand that my doctors would like to have me on as few pills as possible and obviously, I would love that too, but seriously, they are NOT the one having seizures here and I CANNOT have uncontrolled seizures! They are ruining my life and NO-ONE WANTS EPILEPSY! :cry: I just hope that my Neurologist will agree and that the drugs will work and we will have no more trouble.

Just wanted to let you know what was going on...

Keep well and God bless!

MARYCAIN
02-28-2007, 05:56 PM
I am sorry you are having such a difficult time. Imipramine is often prescribed in the US under the brand name Tofranil, for treating depression and some chronic pain conditions, including fibromyalgia. It's a tri-cyclic antidepressant and they have a lot of potential side effects and drug interactions, so it doesn't seem like that particular drug would be a good choice for you, especially with a history of seizures. Even though you may not to continue taking this med - it's dangerous to just stop taking it, so you need to talk to your doctor about how to wean yourself off.

I know your mom has some medical training - does she know how to give injections? If she does, then you should talk to your doctor about having injectable Ativan or Valium on hand in case you do go into status. I don't think a vasovagal episode could cause the symptoms you are having now - most people who vasovagal just faint and then recover in a few minutes with no aftereffects - there is no postichtal state like you would experience with a tonic-clonic seizure. But I am wondering if you have ever been on an ambulatory 24 hour cardiac monitor (called a holter monitor in the US). It's a small cardiac monitor you wear and it records your EKG tracings for 24 hours. If you are having periods of slow heartbeat that might be triggering your episodes, it might be a good way to find out what is going on.

IloveHistory
02-28-2007, 06:35 PM
Hi Marycain!

Thanks very much for your advice and support.

Yes, I have been on a holter monitor for twenty-four hours, but it didn't pick up anything like that... I have also had an Echocardiogram and everything was perfect: my Paediatrician/Paediatric Cardiologist told me that I have "a beautiful heart"! :lol:

Also, I have a Tachycardia and my heartbeat is always above 120 beats per minute at rest (it has been 140 beats at rest when I was in Hospital once!), so I don't think that my heart rate is likely to suddenly become slow enough to cause syncope.

I will let you know what my Neurologist says tomorrow.

Keep well and God bless!

IloveHistory
03-01-2007, 06:08 AM
Hi Marycain!

Well, I had a bad night. :cry: Unfortunately, I woke up at approximately 04:00 a.m. having a Frontal Lobe seizure (where I lose control of my left arm and it flaps and flies around all over the place; this is another thing that Vasovagal Syncope does not explain!)

I felt extremely nauseous and actually woke my mom up because my stomach wouldn't stop running and then I began to vomit. Unfortunately, my stomach did not like the Sertraline, so now my Psychiatrist has changed my Fibromyalgia meds to something else.

I had almost no sleep and felt extremely ill when I woke-up again this morning, so I could not go to school. :cry: Plus, my left arm felt as if I had broken it; it was SO sore, weak and tired! :cry:

My mother spoke to my Neurologist's nurse and she (the nurse) said that she would get in touch with him as soon as possible. However, he is not available until Monday because he practises at another hospital on Thursdays and Fridays because that hospital does not have a Neurologist. I think that the nurse will phone him on his cellphone or something, though. She said that she would get back to us as soon as she could, but in the mean time, she said that under no circumstances am I to stop taking the Epilim. My mother explained the situation to her and said that I am in no state to be monitored on an E.E.G. for a week and the nurse was very understanding and nice about it. I will let you know what my Neurologist says as soon as I hear.

Keep well and God bless! :)

IloveHistory
03-12-2007, 10:32 AM
Hi Marycain!

Well, I discovered on Friday that I have a Thiamine (Vitamin B1) Deficiency, which was most likely responsible for my weird eye movements. My hands and feet started to burn uncontrollably on Wednesday night; it was so bad that I couldn't even allow the duvet to touch my feet! :cry: When I woke-up on Wednesday morning, though, I had the worst back spasm of my entire life, which believe me, is really saying something! My back was driving me CRAZY with pain and the burning started that night, so I am not sure if this was related? :?

Anyway, my Paediatrician/Paediatric Cardiologist has given me 100mg of Thiamine per day for two weeks, which I started on Friday. It already seems to be helping, which is great and for the first time in days, my feet and hands did not burn last night! :)

My best friend slept over at my house on Saturday night and for some reason, I could not sleep that night (I've suffered from Insomnia for years, though). I was still awake at 03:00 a.m. and was just lying down and thinking (we slept on camping mattresses in the lounge). The next thing I knew, I was sitting on my bed in my bedroom and had drooled all over my face! :?: :? I must have had a Complex Partial Seizure and wandered off to my bedroom?!

Plus, this one bone on the right side of the back of my head (there are two identical bones like this on either side, just above the skull) was driving me insane with pain (I don't know if I had a tonic-clonic seizure and hit it somehow?)! I woke my mom up and told her about it. Then, I went to go and lie down again. Everytime I moved my head, a searing pain would go through the right side of my head. Eventually, I dropped my head lightly onto my pillow and this extreme pain shot through my head, from the back to the front and then everything went black. I think that I fainted from the pain, although I may have had a tonic-clonic seizure.

I spoke to my Psychiatrist this afternoon and he told me that my Neurologist told him that it's not Epilepsy. Well, the Frontal Lobe Seizures must be Epilepsy because there's nothing else that they can be. I then spoke to my Paediatrician/Paediatric Cardiologist about my seizures and when I explained them to him in more detail, he agreed with me that they did not sound like Vasovagal Syncope. There are just way too many reasons why it cannot be Vasovagal Syncope. I think my Neurologist is saying that it's not Epilepsy because he doesn't think that it's possible to have seizures originating from three lobes, but you know what? I don't care what his textbook said because I am not a textbook, end of story. Both my Psychiatrist and my Paediatrician/Paediatric Cardiologist say that I must phone my Neurologist and speak to him tomorrow.

I am just getting SICK AND TIRED of this nonsense! :mad: Everyone thinks that I should go on the E.E.G. to be monitored for a week with the Epileptologist. In a way, I think that the Epileptologist would be a good person to speak to about the seizures because he may be able to help me more (my Paediatrician reassured me that he's brilliant and everyone says that he's excellent), so in that regard, this would probably be a good idea. However, I am absolutely TERRIFIED that I won't have a seizure while I am there and then they won't believe me! :cry: All of my friends, my mother and half of the teachers in my high school have seen me have seizures and I'm sorry, but it cannot be possible to fake having a seizure! It just CAN'T be possible! I seriously hurt myself! No-one could hurt themselves like that if they were conscious; they especially could not allow themselves to drop to the floor and hit their head so badly that it swelled and then convulse for another two-three minutes, while banging one's head into the floor!

This is really FRUSTRATING me! :mad:

MARYCAIN
03-12-2007, 12:11 PM
I agree that is very frustrating, and you definitely need to have a long conversation with your neurologist to clarify what he is saying. It may simply be a difference in terminiology. For instance, although I have seizures, my neurologist doesn't consider that I have epilepsy, since my seizures are directly related to neuro involvement from the lupus. The way epilepsy is classified in the US, it's possible to have a seizure disorder that is not "epilepsy" per se - for example, seizures related to a metabolic disorder. So maybe that is what your neurologist is saying, that you have a seizure disorder that is not epilepsy, but some other type of seizure disorder.

Do your doctors know what is causing the thiamine deficiency? Is it possible that it is a symptom of some underlying metabolic disorder, which could also be causing the seizures/

IloveHistory
03-12-2007, 01:10 PM
Hi Marycain!

I never thought of that; thank you very much for pointing that out to me. I suppose I will have to speak to my Neurologist about this. The only thing is, why doesn't he want me to be on any anti-epileptic drugs then? I think that he is just worried about side-effects and thinks that the A.E.D.s are making everything worse, but the A.E.D.s help me! Besides, I'm on a low dose of Epilim at the moment anyway.

I'm not really sure about the Thiamine Deficiency; could Celiac Disease be causing this?

Thanks and keep well! :)

MARYCAIN
03-12-2007, 02:38 PM
I think anything that affects your body's ability to absorb nutrients could cause this type of vitamin deficiency - so can severe diarrhea, so the bout of dysentery you had could have triggered it. I'm not sure why your doctor would want you to discontinue your seizure meds, but he may be wanting to do diagnostic tests that require you to be off your AEDs to get an accurate result - I've had a couple of tests that were like that. He might also be concerned about the possibility of paradoxical seizures caused by the meds themselves. But whatever he's thinking, he needs to be discussing it with your directly rather than with your other doctors. Is there any way you can set up a meeting with him and your other doctors to develop a better approach to managing your seizures?

tash-lee
03-12-2007, 05:50 PM
Hi ilovehistory,

i was wondering if you were still experiencing the "floating" feeling?

I have been having this feeling for a few months now, its hard to explain how it feels i tried to explain it to my rhumie but i dont think she got what i was getting at.

I ahvent been diagnosed with lupus, but have Undifferenciated Connective Tissue Disorder

IloveHistory
03-13-2007, 01:37 PM
Hi!

Tash-Lee: Yes, I am still experiencing that awful "floating" feeling; it's almost impossible to explain or describe! It is most likely due to low blood pressure. Do you suffer from low blood pressure?

Marycain: We are EXTREMELY disappointed with my Neurologist... My mother and I went to see my Psychiatrist today and he told my mother to phone my Paediatrician/Paediatric Cardiologist and my Neurologist and to ask my Neurologist for a straight answer - is it Epilepsy? Yes or no and why?

Now, my Paediatrician/Paediatric Cardiologist is exceptionally well-known and extremely busy. He works at three different hospitals and deals with many paediatric cardiac emergencies. He is also the only Paediatric Cardiologist in private healthcare in Cape Town. However, he ALWAYS finds the time to phone my mother or I. He ALWAYS returns our calls and never cuts us off. He will talk until the issue is dealt with, he is completely honest and always very kind and supportive. Sometimes he just calls to see how I am when I have been very ill and to check up on my Asthma. He called my mother back during his lunch hour and he chatted to her for twenty to thirty minutes. Sometimes, when I'm sick, he will squeeze me in during his lunch hour or take me after his usual ending-time because he cares so much.

My Neurologist, however, never called back. Instead, he got his nurse to call my mother and ask if there was a problem with me. My mother told his nurse that she actually needed to speak to my Neurologist, so his nurse said that she would pass the message on, but he never did call back. My mother was really angry and my Psychiatrist was really shocked. We are all just really disappointed in my Neurologist. It's almost like my case is too complicated now, but he just won't admit that he actually doesn't know, so he's avoiding us. I think that he's too scared to tell my mother. It looks like we are going to have to change neurologists now...

Sigh! Back to square one...

tash-lee
03-13-2007, 04:28 PM
Hi Ilovehistory,

You have done a much better job of describing it then what i did, when ever my partner would ask what was wrong i would say i feel wierd and the world is spinning :roll: floating is a much better word.

I dont believe i have any blood pressure issues.

There are some wierd things going on with my brain though, a couple of days ago i lost my balence while bending down fell back and knocked the back of my head on the arm of a chair, it wasnt hard or anything like that my partner saw the whole thing and said it didnt look hard but boy the pain was the worst ive ever felt (ive had a spinal fusion and had no painkillers afterwards so i have high pain levels) since then itsbeen very sore to touch, its no raised and i constantly have a throbbing pain there.

I also find myself spacing out for a few sec to mins and then coming back to a state where i can function and not remembering where i am, im always forgetting things, i get my words mixed up and i forget what im doing at times all of these have been happening before i hit my head but have worsened since i hit my head.

do you have any of these things happening?

IloveHistory
03-14-2007, 08:01 AM
Hi!

Tash-Lee: Perhaps you should have your blood pressure tested? Mine is extremely low and I also suffer from Orthostatic Hypotension, as does my father.

I have quite a few neurological problems, including a seizure disorder, so I do have Complex Partial Seizures where I "phase out". However, unless someone else picks it up, I don't usually know that I've had one, although I can sometimes guess when my consciousness returns and I've missed important things.

Have you ever seen a Neurologist? Have you mentioned all of these things to your Rheumatologist and your G.P./P.C.P.?

Keep well! :)

tash-lee
03-14-2007, 04:29 PM
Hi

I iwll ask my GP to test it for me on monday when i go see him, i think i was tested only in Dec, but will get tested again.

And your only 16 you poor thing :(

No i havent seen a neurologist, what do they do? i have mentioned the "floating" to my rhumie but i dont think she quite understood what i was trying to say. i will def tell my GP everything when i see him on monday hes pretty good always gets his book out and double checks everything with me.

I had a really bad morning this morning, first off i forgot to bring my tablets to work :roll: not too much of a big deal as i can take them with dinner if need be, then when i was at work i put my toast in walked back to my desk to get something to put on it completely forgot what i was doing forgot the toast was in there and almost got the WHOLE building evacuated :(

IloveHistory
03-14-2007, 04:58 PM
Hi!

Tash-Lee: A Neurologist is a doctor who specialises in the brain, nerves and spinal cord. They also deal with specific neuro-muscular diseases, as well.

I'm SO sorry that you had such a bad day :cry:, but I'm really glad that you are going to tell your G.P. about this. I'm really glad that you have a good G.P.! :) Keep telling your Rheumatologist too, about all the other things that keep happening, as well.

Keep well! :)

tash-lee
03-14-2007, 07:49 PM
Hi,

Oh ok i think i have seen one before, but that was for my spinal fusion.

I was so embaressed and angry, i just want to go home and cry. All my docs are really good ive been very lucky. Your hospital systems sound so horrible, i live in Australia here its not that hard to find a good doc, well ive only ever had 2 bad doctors.

I will see what my GP says on monday but i will most likely end up giving my Rhumie a call to see if i can up the doseage of Prednisolone as my symtoms seem to be getting worse so i will let her know then too, i dont go back until May to see her.

How are all your probs with doctors going? are you going to have to find a new Neurologist?

IloveHistory
03-16-2007, 11:21 AM
Hi!

Tash-Lee: For your spinal fusion, you would most likely have seen a Neurosurgeon (a brain, nerves and spinal cord surgeon) or an Orthopaedic Surgeon (muscoskeletal system surgeon and doctor) or a Spinal Surgeon because Neurologists do not operate on people. Did you have a Spinal Fusion due to a Scoliosis?

Well, I live in South Africa! :D On the whole, our doctors are brilliant, but, of course, there are some idiots around! :wink: :x

Good. I am also seeing my Rheumatologist in May next.

Marycain and Tash-Lee: Well, it looks like we are going to go and see the Epileptologist and I think that's best. He will be able to recommend a good general Neurologist as well. I had another seizure at school yesterday! :cry: I am just SO sick and tired of this! :x :cry:

Keep well! :)

tash-lee
03-19-2007, 04:30 PM
Hi,

Sorry i havent replied i have been having a few "bad days"

Yes i have scoliosis. do you have it too? i think there is a connection between the two what do you think? that doc didnt opperate on me he was only there to monitor my spinal cord.

Yes there are some idiots, i had one that wanted to retest me for an infection that id already had done that came back neg then when his results came back neg he said this is good your infection is going away :mad: what infection there wasnt one to start with.

Well i went to the GP last night, he said i have slightly high blood pressure nothing too major, and the other symtoms are caused by the tablets, and my head aches are from tension in my neck so i have to go to a physio. He has also taken some blood to test my thyroids, ANA and liver function.

Aww you poor thing, i hope you are feeling a bit better now, have you gone to the Epileptologist?

Hugs :lol:

IloveHistory
03-20-2007, 07:55 AM
Hi!

Tash-Lee: No worries! Yes, I also have a Scoliosis, unfortunately. :( Did you find the spinal fusion helpful? Did it reduce your back pain?

Oh my word! That is hilarious! :lol: What a quack! :wink: :lol:

Physiotherapists are great! I'm going back to Physio. for my back; I should never actually have stopped. I did it from age six to age fifteen and then I stopped at the end of 2005. I need to go back to Occupational Therapy as well, which I did from age four to age ten.

Marycain and Tash-Lee: Well, I had a bad seizure at school yesterday and bit my tongue for the first time! :cry: :x It was SO sore! I just spoke to my friend in my grade, who also has Epilepsy and she is also on Epilim. I am on 600mg per day and I had to listen to all this rubbish about how the dosage is so low that it's not even a maintenance dose and it's probably not even doing anything, blah, blah, blah and now my friend tells me that she's only on 200mg a day! She has really bad Epilepsy and has had it for years and years, since she was quite small?! :? I just don't understand this at all?! :?

Well, I'm seeing the Epileptologist on 28th March, so, hopefully, we'll be able to sort everything out.

Keep well! :)

tash-lee
03-20-2007, 04:24 PM
Hi

What was your degree? did you have to wear a back brace? Yes the fusion was very helpful, im 6cm taller :lol: It reduced the pain until i started having symtoms of UCTD.

Yer i went to the physio yesturday at lunch and go back tomorrow, i will also have to have massage :lol:

Awww *hugs* I hope the epileptologist can help.

IloveHistory
03-21-2007, 07:02 AM
Hi!

Tash-Lee: You know, I actually don't know what the degree is and never have! I've just never been told?! :? :x I was supposed to wear a back brace, but now there is some problem with this because of the way that I've grown or something and my other spinal problems, so the Spinal Surgeon said that I would have to wait until I was older (i.e. roughly twenty years old or so) and then have an operation. :(

I'm really glad that the Spinal Fusion helped you! :) Do you/did you have any other spinal problems?

Thanks, so do I!

Keep well! :)

IloveHistory
03-28-2007, 01:26 PM
Hi!

Well, I went to see the Epileptologist today and he was absolutely FANTASTIC! :D I really, really like him; he is very calm, sweet, kind and understanding, just like my Paediatrician/Paediatric Cardiologist! :D They both speak in exactly the same, calm voice! :lol:

Anyway, the Epileptologist spoke to both my Psychiatrist and my Neurologist and he is going to book me in next week for Epilepsy monitoring.

We have just discovered that my entire endocrine system is completely messed up and only the thyroid gland actually seems to be working properly! I am definitely suffering from Hypoglycaemia (Marycain, guess what I'm thinking? :wink:) and my pancreas has gone crazy! My blood sugar levels are spiking up, down, up, down, etc.! My adrenal glands are producing too much Adrenaline, too much Androstenedione and not enough Cortisol, plus, there are other problems there too! The Epileptologist thinks that this started as Epilepsy and he confirms that I definitely have a NON-PSYCHOGENIC Seizure Disorder (I suffer from Cyanosis after seizures, my speech is messed up and I'm often paralysed; he spoke to my school nurse, who used to be a psychiatric nurse). He thinks that my seizures are being caused by a combination of Hypoglycaemia, plus half of the other various endocrine problems; Celiac Disease; and heart block, which prevents oxygen from reaching my brain, so I convulse. However, he wants to make 100% sure that I do not have Epilepsy (as in, a focal point "sparking off" in my brain, in which case I will have to stay on the Anti-Epileptic Drugs).

My Paediatrician/Paediatric Cardiologist is going to have to sort out the heart block, which is going to be difficult because I have Asthma and Raynaud's, so I cannot take beta-blockers. He does want to put me on a salt-retention drug to attempt to control my extremely low blood pressure though, which I think will be a good idea.

What I mentioned above is what my Epileptologist thinks is causing the tonic-clonic (grand mal) seizures and the complex-partial seizures. However, he is not entirely sure what is causing the "frontal lobe" seizures, although he said that it may be an unusual type of movement disorder, caused by the virus which I contracted. He said that I may grow out of it or it may disappear when my endocrine problems are fixed, but if not, they might have to take another look at it when I'm a bit older. These seizures aren't too much of a problem because, as frightening as they are, they only seem to happen at night and not nearly as frequently as the other seizures. Plus, my consciousness is preserved, so we are not too concerned about these.

Wow! What a relief it was, going to see the Epileptologist! I'm SO glad that I went because he really is absolutely brilliant! :D

Keep well! :)

IloveHistory
03-28-2007, 01:27 PM
Hi!

Well, I went to see the Epileptologist today and he was absolutely FANTASTIC! :D I really, really like him; he is very calm, sweet, kind and understanding, just like my Paediatrician/Paediatric Cardiologist! :D They both speak in exactly the same, calm voice! :lol:

Anyway, the Epileptologist spoke to both my Psychiatrist and my Neurologist and he is going to book me in next week for Epilepsy monitoring.

We have just discovered that my entire endocrine system is completely messed up and only the thyroid gland actually seems to be working properly! I am definitely suffering from Hypoglycaemia (Marycain, guess what I'm thinking? :wink:) and my pancreas has gone crazy! My blood sugar levels are spiking up, down, up, down, etc.! My adrenal glands are producing too much Adrenaline, too much Androstenedione and not enough Cortisol, plus, there are other problems there too! The Epileptologist thinks that this started as Epilepsy and he confirms that I definitely have a NON-PSYCHOGENIC Seizure Disorder (I suffer from Cyanosis after seizures, my speech is messed up and I'm often paralysed; he spoke to my school nurse, who used to be a psychiatric nurse). He thinks that my seizures are being caused by a combination of Hypoglycaemia, plus half of the other various endocrine problems; Celiac Disease; and heart block, which prevents oxygen from reaching my brain, so I convulse. However, he wants to make 100% sure that I do not have Epilepsy (as in, a focal point "sparking off" in my brain, in which case I will have to stay on the Anti-Epileptic Drugs).

My Paediatrician/Paediatric Cardiologist is going to have to sort out the heart block, which is going to be difficult because I have Asthma and Raynaud's, so I cannot take beta-blockers. He does want to put me on a salt-retention drug to attempt to control my extremely low blood pressure though, which I think will be a good idea.

What I mentioned above is what my Epileptologist thinks is causing the tonic-clonic (grand mal) seizures and the complex-partial seizures. However, he is not entirely sure what is causing the "frontal lobe" seizures, although he said that it may be an unusual type of movement disorder, caused by the virus which I contracted. He said that I may grow out of it or it may disappear when my endocrine problems are fixed, but if not, they might have to take another look at it when I'm a bit older. These seizures aren't too much of a problem because, as frightening as they are, they only seem to happen at night and not nearly as frequently as the other seizures. Plus, my consciousness is preserved, so we are not too concerned about these.

Wow! What a relief it was, going to see the Epileptologist! I'm SO glad that I went because he really is absolutely brilliant! :D

Keep well! :)

MARYCAIN
03-28-2007, 04:12 PM
I'm happy you are FINALLY getting some answers! This doctor sounds very thoughful and competent. Keep us posted on how things are going.

IloveHistory
03-28-2007, 04:29 PM
Hi Marycain!

Thanks, will do! :)

Keep well! :)

tash-lee
03-29-2007, 10:19 PM
Hi ilovehistory,

sorry it been so long, Ive been having a bit of trouble trying to cope with things, last week was my 19th birthday and everyone kept asking me what i wanted for my birthday and all i could answer was there is no point getting me anything as you wont be able to give me what i want, a day drug and pain free. i dont know what to think anymore im such a mess, my hair is starting to fall out and noone believes me, my mum says im just stressed and my partner just tells me ive always lost a large amount of hair or well if i pulled on my hair it would fall out too. im starting to think its all in my head because no body listens to me.

What are you other spinal problems. the reason i was put into the brace was to stop it from getting worse as i grew so one would assume they should put you in one asap. i dont know why you would have to wait until you were 20 for the opp, i was told as soon as you stop growing it should be done, i had mine when i was 15.

Yer the spinal fusion was a great sucess, i have pics ill have to work out how to pm some of them to you.

Im so glad things are look up for you, its about time. You are my insiration. Keep smiling let me know how things are going.

IloveHistory
03-31-2007, 01:54 PM
Hi Tash-Lee!

HAPPY BIRTHDAY! :D :new-bday: I really am sorry that you are going through such a tough time though. :cry: Please don't lose hope though; all of us here on the Forum are there to support you and God is always there! :angel: :lilangel: NOTHING IS IN YOUR HEAD! Never begin to believe that! Please know that I am praying for you.

You are not going to believe this, but my hair is falling out too! :shock: :cry: I think that it's the Epilim, but no-one is taking me very seriously either. After wearing a jersey, I have to pick off loads of strands of hair that have been left behind where my hair was. I have extremely thick and very, very long hair though, so luckily, it's not that noticeable. I am hoping that once I stop the Epilim, it will stop, but if not, I suppose that I will have to go and see the Dermatologist. Perhaps you should go and see one about your hair loss? Maybe you should do what I am doing. I am collecting all of the strands of hair that fall out and collect on my jersey after wearing it and each time, I place the strands in a separate little plastic packet, so that, if need be, I can show the Dermatologist and/or any of my other doctors. I have already told my Psychiatrist and he actually saw it happening; I showed him the back of my white jersey.

I have a Scoliosis, Scheuermann's Disease/Sheuermann's Kyphosis and Spina Bifida Occulta/Occult Spinal Dysraphism. I also have a neuro-muscular condition known as Hypotonia (low muscle tone), mainly in my back and my feet. In babies, it is also known as 'Floppy Infant Syndrome' because the baby is unable to hold him/herself up and just flops backwards when held, i.e. they need a lot of support. When I was born, it was really bad in my feet and they thought that I might never be able to walk because my feet would not be able to take my weight. Thankfully, that never happened. Do you have any other orthopaedic problems? I have a pelvic tilt (the one hip is much higher than the other, so my one leg is now longer than the other! I am seriously skew! :lol:); I have some problem with my ankle bones and have to wear Orthotics in my shoes because my feet are completely flat (i.e. they have no arch). I also have the infamous T.M.J. Dysfunction thanks to a very bad accident which I had when I was eleven. :x

Thank you SO much! :D

Keep well and continue to be strong! :) :B-fly:

tash-lee
04-01-2007, 05:15 PM
Hi ilovehistory,

Thanks you so much :lol: Im trying my hardest not to loose hope just some days its so hard, i just wish i knew what was a symtom and what is just normal, everything i feel is normal to be, its hard to comprehend that people actually go through a day without pain. Thank you for your prayers.

I did a search on here on hairloss and apparently it can be a sign of a lupus flare or caused by prednisolone. i used to have thick hair, i never wear my hair out now, atleast if i tie it up in a bun the only time it falls out is in the morning when i take it out to brush it. Do you have a really itchy scalp coz mine is really itchy.

WOW, thats alot of big words lol. i was always told by my doc that i was a very rare case as not many people have scoliosis as bad as i did and dont have anything else wrong with them. scoliosis seems to be the only orthopedic problem i have, thank god. May i ask what happened when you were 11?

Thank you so much for all your kind words :lol:

IloveHistory
04-02-2007, 12:43 AM
Hi Tash-Lee!

It's only a pleasure! :D

Thanks. Yes, I also have an itchy scalp?! :?

When I was eleven, I tripped over a chain which was there to prevent cars from driving into the school yard. I quite literally 'flew' through the air and landed on my chin! I knocked my front two teeth clean out of my mouth and broke/chipped another nine teeth. I also dislocated my left elbow, broke my nose and grazed nearly every spare inch of my body. Apparently, I also had a concussion, but all that I can really remember is lots of blood pouring out of my mouth and nose. I then did my Ballet Examination an hour later, having only seen the school nurse! :shock: :lol:

Keep well! :)

tash-lee
04-02-2007, 06:00 PM
Hey,

Have you been on a plane recently? im about to fly on one for the first time in about 10 years and im really worried about my back and everything else, i dont want to get over there and feel really crap.

Stupid itchy scalp :mad:

Wow what a story! we kids do crazy things.

IloveHistory
04-03-2007, 10:58 AM
Hi!

Yes, I was on a plane in March/April last year; it wasn't too bad.

Where are you going?

We certainly do! :lol:

Keep well! :)

tash-lee
04-04-2007, 01:16 AM
Hey,

Thank god for that. Im off to Sydney (the other side of australia for me) to go and see the Red Hot Chilli Peppers Play.

I had another bad night last night, im sick of not knowing what to do and where to start, i cant handel it anymore :mad:

Keep Well.

IloveHistory
04-04-2007, 09:55 AM
Hi!

That sounds nice! :) I've been there before (most of my father's family currently live in Australia) when I was younger. When do you leave?

I'm sorry that you are going through such a tough time, Tash-Lee; I will continue to pray for you.

Marycain and Tash-Lee: Well, the Epileptologist had an emergency, which I completely understand and now he has gone on a Conference (which we knew about) and there are only four beds in the Neuroscience Ward for Epilepsy Monitoring, so now I can only go in June! They promised that if there were any cancellations, they would let us know. Sigh! Now I am stuck on the Epilim, which seems to be making my hair fall out, until June! :x Oh well, these things happen, I suppose! It's probably better anyway, since I am ill at the moment.

Keep well! :)

tash-lee
04-08-2007, 05:12 PM
Hi,

I leave on wednesday night, i know im not going to be feeling too well when i get back so the last few days its been rest rest rest.

Im doing a little bit better today, ive spend the last few days at my parents getting good food and being looked after, now im back at my house and have been able to better explain things to my partner so hopefully i will get a little bit more understanding from him, its just so hard to explain it all to him.

OH NO! :mad: i hope you are feeling better now.

Keep Well.

IloveHistory
04-09-2007, 01:55 PM
Hi!

Tash-Lee: Enjoy your trip! :D

Thanks very much; I am struggling to build up my strength, but I'll get there, eventually! :wink: I've got the Flu at the moment though! :x

Marycain: My hands and feet have been tingling, burning and paining like crazy for AGES now and it just keeps getting worse! :mad: It's definitely not Beri-Beri this time because I am on seriously high-dose Vitamin B Complex supplements and have been for a while now. It can't be the Epilim either because this started before I went onto the Epilim and it can't be the Lamictin (Lamictal/Lamotrigine) because that has been out of my system for at least four months! Is it possible for someone my age to get Neuropathy? This is driving me CRAZY and it's much worse at night! I am permanently having to shove my feet under cold water to try and ease the burning and I just can't stand it anymore! :cry: I've had this for months now and it's actually getting ridiculous!

Thanks very much!

Keep well! :)

MARYCAIN
04-09-2007, 02:19 PM
Unfortunately, it's possible to get neuropathy at any age, and your underlying endocrine and autoimmune problems might make you more prone to this. The diagnostic testing process for neuropathy is fairly complicated and often involves nerve conduction testing. But if you continue to have the symptoms, the nerve conduction studies might be necessary to figure out what is going on. In the meantime, you might ask your doctor about a topical form of elavil to use as an ointment on your skin - it helps the burning and stinging feelings. A viscous lidocaine ointment will work too, but it's tricky stuff because it's easily absorbed through the skin.

You may need to check your vitamin B-6 intake - too much vitamin b-6 can cause tingling and burning in the hands and feet, decreased sensation to touch and vibration, and other symptoms consistent with neuropathy. So if you are taking megadose B-vitamins, you may be getting more B-6 than your body can handle.

IloveHistory
04-09-2007, 03:06 PM
Hi Marycain!

Thank you very much for your response. I will be sure to speak to my Paediatrician/Paediatric Cardiologist about this, as I am seeing him this week. I will let you know what he says.

Keep well! :)

IloveHistory
04-11-2007, 05:27 PM
Hi!

Well, Marycain, I now possibly have something else to add to my list of endocrine problems - it looks like I have Adrenal Insufficiency (most likely due to my Pituitary Gland not working properly). :x Does this ever end? :(

I'm on the contraceptive pill for my ovary problems now though and this usually doubles the Cortisol levels, so we cannot test me again until I am off of the pill. They looked over my endocrinology labs again (taken before I started the pill) and there is a problem with the Random Cortisol test because the lab. works with a.m. and p.m. reference ranges and mine was drawn just after 12:00 noon, causing it to fall under the p.m. range. Under the p.m. range, the level is alright, but under the a.m. range, it is very, very low. Technically, the results should therefore be viewed under the a.m. reference range. The lab. did add a special * next to the 'Cortisol, Random' result, indicating 'alert', so now we'll just have to wait, I suppose...

Gees! No wonder I'm having seizures! :roll:

Keep well! :)

IloveHistory
05-07-2007, 01:32 PM
Hi!

Well, I had another seizure at school today... :x I had it in one of the bathroom cubicles, which is very small and narrow and I must have hit my head very hard against the wall as I fell because I had terrible pain on the side of my head afterwards and that spot is now tender to the touch. When I came round, I couldn't see properly; everything was blurry! :(

This is SO annoying! I think it was because my electrolyte levels were very low (I was on a drip in hospital on Friday for this - my Sodium and Potassium levels were really low and they found ketones in my urine).

My Paediatrician/Paediatric Cardiologist spoke to my mother and I about possibly trying a salt-retention drug (Florinef, I think? I'm not sure) because of the Hypotension, Vasovagal Syncope, electrolyte problems and seizures. My body has a serious problem retaining sodium and potassium. My stomach only has to run once and everything goes upside down. Not to mention the Hypoglycaemia...

Keep well! :)

MARYCAIN
05-07-2007, 01:46 PM
I'm so sorry this happened - I'm glad you were not badly hurt.

Florinef (fludrocortisone) is a steroid drug that is used to treat Addison's Disease, and some types of low blood pressure. One of the side effects is sodium retention, so that might be why your doctor is recommending it. It can cause a lot of swelling and fluid retention, so you need to be monitored pretty closely while you are taking it. I hope it helps! :)

IloveHistory
05-07-2007, 02:48 PM
Hi Marycain!

Thanks very much! :) My doctors think that I may have some type of Adrenal Insufficiency. Would the Florinef help with this then? Do you know what causes Adrenal Insufficiency and whether it could be caused by the fact that my Pituitary Gland isn't working properly?

Thanks and keep well! :)

tash-lee
05-08-2007, 12:19 AM
Hi Ilovehistory,

I was hoping to come back from my holiday to hear of improvements from you, but no such luck :mad:

I hope Florinef will help you some.

With Love
Tash

Ruth1980
05-08-2007, 03:53 AM
Hi I love history! I am sorry to hear about your seizures! I get those to and they can be terribly unsettling. The Doctors have told me that I have Adrenal Insufficiency as well. I have used Florinef for that, Marycain is right that you do have to be carefully monitored when you take it, but it does help. Please keep me posted on how everything turns out for you! Best of Luck-- Ruth

IloveHistory
05-08-2007, 01:27 PM
Hi!

Tash-Lee: Thanks! :) How was your trip?

Ruth1980: Thanks very much! :) I'm so sorry to hear that you have seizures too. Do you mind me asking which anti-epileptic drug(s) you are on?

Keep well! :)

Ruth1980
05-08-2007, 06:41 PM
I love history, I am on gabapentin right now, the dr might have me try Lyrica, we'll see how this medication turns out. Before I was taking florinef. Good luck!

tash-lee
05-08-2007, 08:36 PM
Hey,

My trip was really really good, i needed a break.

My health was good while i was over there...i think it was the excitement that held off the pain.

When i got back to Perth i slept for a whole day and now the pain has kicked in double time, the doc has put me on 10mg of methotrexate :?

i will post up some pics of my holiday when i get home :lol:

Keep well.

With love
Tash[/img]

IloveHistory
05-09-2007, 09:30 AM
Hi!

Ruth1980: Thanks. :) If you don't mind me asking, what kind of seizures do you have?

Tash-Lee: I'm SO glad to hear that your trip went well! :) I am upset to hear that you are not well; I will pray for your speedy recovery. How are you handling the Methotrexate? Is it making you nauseous at all?

I'd love to see some of your pictures! :) Thanks! :)

Keep well! :)

tash-lee
05-09-2007, 05:14 PM
Hi,

Thank you, we are off to my GP on monday as both my mum and i arent happy with my progress, im on 400mg of plaqunil, 200mg of celebrex, 10mg of prednisolone, 10mg of methotrexate and 20mg of something else to prevent stomache ulcers (cant remember the name of it) and yet i still wake up every day with no improvement, the doctor doesnt answer my questions she answers them with more questions :mad: mum wants a second oppinion and to try some alternative medicine.

As for the Methotrexate i feel like crap, i feel soo tired, the day after i took it i felt very nauseous, i bent down to put some paperwork in our mail draw at work and almost threw up in it.

Are you on Methotrexate? does it make you feel horrible?

IloveHistory
05-10-2007, 01:35 PM
Hi Tash-Lee!

I'm SO sorry to hear that your meds aren't helping... :cry: Do you have a Rheumatologist or is your G.P. treating your S.L.E.?

No, I am not on Methotrexate, but I know that it usually makes people feel very sick. My doctors won't give me anything like that because they are too concerned about the virus which is circulating throughout my body. Under no circumstances will they give me immunosuppressive drugs because they are scared that the virus will finish me off... However, my Paediatrician/Paediatric Cardiologist prescribes Prednisone for me when I am struggling with very bad inflammation, e.g. lung problems, etc.

At the moment, I'm on:

*Epilim (for Epilepsy)
*Prozac (for Fibromyalgia) because the others have terrible side-effects for me and I am allergic to Sertraline (Zoloft)
*Zyrtec (for Allergic Rhinitis and Chronic Urticaria - Hives)
*Yasmin (for endocrine problems)
*Synflex (for suspected Endometriosis/menstrual problems) - only when menstruating
*Inflammide Novolizer (for Asthma)
*Ventolin (for Asthma)
*Combivent Solution for Inhalation (for Asthma) - only when needed though
*Nasonex (for Allergic Rhinitis, Nasal Polyps, etc.)
*Kenalog in Orabase (for oral ulcers)
*Scheriproct Ointment (for anal ulcers :oops:)
*Ennablex (for Interstitial Cystitis) - only when needed though
*Zelnorm (for I.B.S.)
*Agiolax (for I.B.S.)
*High Potency Vitamin B Complex
*Folic Acid
*High Dose Omega 3 Fatty Acids
*Lipogen Lipotropic Formula (for liver not making enough bile salts)
*Zinc
*Vitamin C
*Calcium and Magnesium
*Procydin
*Multivitamin and Mineral Supplement

I'm also on meds for Pleurisy at the moment. :(

Keep well! :)

IloveHistory
05-26-2007, 01:36 PM
Hi Everyone!

Well, I have been off of the Epilim for a while now. The problem is that what is most likely causing all of my seizures (Hypoglycaemia, Celiac Disease, electrolyte problems, high fevers, endocrine problems), is not helped by any anti-epileptic drug, so the drug will not prevent my seizures from occurring. It got to the stage where I was sick and tired of my hair falling out, so we decided to stop the Epilim. I am on a very strict diet for Hypoglycaemia at the moment, so, hopefully, this will improve soon. Of course, I am still having seizures though. :(

One of the best Professors of Immunology in South Africa met with my Psychiatrist, my Clinical Nutritionist and another lady who might become my Neurologist soon on Friday. My Paediatrician/Paediatric Cardiologist urgently wanted to come, but then had to cancel at the last minute because he had a cardiac emergency. My G.P. was unable to come and my Epileptologist is away on conference at the moment. Apparently, the meeting went quite well; my Psychiatrist phoned me on Friday afternoon, after the meeting.

My Clinical Nutritionist works very closely with this particular Prof. of Immunology and my stool was recently sent away to Germany for specific pathological testing. I saw my Nutritionist on Wednesday and my mother and I got my results. My Acidophilus count is normal (thanks to all of the probiotics which I have diligently been taking! :wink:), but my E-Coli (as in the good bacteria which live in your gut, not the pathogens) Count, which is supposed to be ten to the power of six, was 0! :shock: No wonder I am so susceptible to infection! :x So, I have been given E-Coli from the Lab. to replenish my "store".

Just thought that I'd let you all know! :)

Keep well! :)

tash-lee
06-05-2007, 05:42 AM
Hey Ilovehistory,

Im glad things finally seem to be going onto a possitive note.

How is school going?

Keep Well

IloveHistory
06-05-2007, 01:56 PM
Hi!

Thanks, Tash-Lee! :)

Well, I started writing exams on Monday 28th May and they've been going pretty well, except that I vomitted my head off (twelve times) when I arrived at school yesterday! :( I don't know why, but I had been nauseous since I woke-up and I took an anti-nausea drug, but it didn't really help. :(

Well, now I'm having another stupid, weird problem. :x My eyes keep blinking crazily and sometimes my head jerks with them; this only happens about once a day and only lasts for about 30-60 seconds, but it's driving me nuts! It's definitely not Nystagmus, which I've had before. I am competely conscious and aware, so I'm not sure if this is some weird type of seizure? :? It stops if I hit the side of my head hard (well, I think it does, but this only started Sunday night, so it might just be a coincidence that it stopped when I did that). Does anyone have any idea what this might be? Marycain?

Thanks and keep well! :)