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Thread: Strange, Tingling Sensations!

  1. #41
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    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! :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!

  2. #42
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    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.

  3. #43
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    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!

  4. #44
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    Hi!

    Well, I went to see the Epileptologist today and he was absolutely FANTASTIC! I really, really like him; he is very calm, sweet, kind and understanding, just like my Paediatrician/Paediatric Cardiologist! 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? ) 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!

    Keep well!

  5. #45
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    Hi!

    Well, I went to see the Epileptologist today and he was absolutely FANTASTIC! I really, really like him; he is very calm, sweet, kind and understanding, just like my Paediatrician/Paediatric Cardiologist! 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? ) 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!

    Keep well!

  6. #46
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    I'm happy you are FINALLY getting some answers! This doctor sounds very thoughful and competent. Keep us posted on how things are going.

  7. #47
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    Hi Marycain!

    Thanks, will do!

    Keep well!

  8. #48
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    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.

  9. #49
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    Hi Tash-Lee!

    HAPPY BIRTHDAY! :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!

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

  10. #50
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    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:

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