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I am really glad I found this forum. I am really struggling with what to demand as far as testing because I don't know what is wrong with me and I am being dismissed.
I am a 29 year old American female living abroad in Denmark. I have been to 3 neurologists here. My questions for you all include: 1. Do my symptoms ring a bell? 2. What tests should I demand? 3. What supplements should I take? Brief (as possible) history: Sep 2008: 30 min of intense formication on both feet and ankles at sister's wedding. I didn't know this was neurological at the time and thought there had been ants I didn't see. No further symptoms. June 2010: found fingernail sized numb patch at top of Left leg next to groin simultaneous with 2 weeks of top of both feet tingles (spot still numb) Sep 20, 2010: Right big toe underneath numb. Lasted a few hours till I walked on it and got feeling back, sat down and intermittent numbness till I went to sleep. Next day mostly resolved. Since then I have had continuous problems (a little over two months): --twitches and jerks all over, worse at night --fasiculations in both feet below ankles after exercise --extremities falling asleep for too long but I can shake them back --sharp pains anywhere but mostly feet, sometimes hands --after jogging sharp pain in toes even "live wire" shock in right big toe and pain in knees the day after, so now I don't run --have seen my lower abdomen twitching/jumping --ringing in left ear --I got a pain in my right rib twice that was very transient and hard to breathe but very brief --"coolness" on top of back after walking and zits all over shoulders (I have always had clear skin) --full body weakness after yoga (I start shaking from muscle fatigue I think and this is happening now just in general) --now: both feet tingle nearly all the time and seems to be headed towards painful feet Like I said I have been to many neuros. The first was with the numb patch and I was told "we are not perfect you know" and no tests ordered. The second after the toe went numb and after a normal clinical evaluation I was told to see a psychiatrist with no tests ordered. The recent third finally ordered an extensive blood test and MRI of brain and spine--all clear so I was told to see a psychiatrist and that no further tests will be ordered. I realize that I have to find a new neurologist and ask for nerve conduction studies and possibly a skin biopsy since they have all completely neglected to test my PN. Are there any other tests I should have? I am taking omega 3 and regular supplements. In 2004 I was anemic (score of 6) but now I am ok with a 24 (I was vegetarian at the time and not knowledgeable about supplementation). There is no history of autoimmune or neuro disease in my family. I don't drink, smoke, or take any meds and I exercise and eat very well. I noticed that my WBC count from July to October has gone down by a little more than one point and is now one point away from being below the minimum--this could be a clue? You can throw your guesses my way as to what this is, it can't scare me after thinking I had MS, a tumor, etc. I know that CIDP can present with sensory problems and motor after 2 or 3 years. I really appreciate any advice you may have, I am quite distraught at watching my situation progressively worsen while being told I am a nut case! It is really unreasonable how I have been treated and I can sympathize with a lot of you that have similarly had to defend your neurological case! |
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