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?
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
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...
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?
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.?
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
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.
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?
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! On the whole, our doctors are brilliant, but, of course, there are some idiots around! :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:
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 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?