Thanks for reading this. I am a 36 year old female. For the past 4 years I've been having problems off and on. It started out with neck, upper back pain with tingling sensations in my fingers and toes. At that time I had a c-spine mri which showed mild bulging discs and mild degenerative changes. My brain MRI showed approx. 5 "UBO's" per the radiologist...not characteristic of MS. These white spots were not in the classic locations or shapes for MS and were small. Sometimes I feel great and sometimes I feel lousy, with lots of numbnesses and tinglings everywhere. I have since had 2 more brain MRI's which showed no changes in these white spots (no gadollinium enhancement) and there have been no changes in my c-spine MRI either. I have seen 2 neurologists which have said "no MS" but I cannot shake the thought. This year I have suffered from chronic headaches and was hospitalized twice. I really did not have bad headaches like this before this year. With these headaches I have felt a little off balance. My tongue burns almost constantly and now I am battling low back pain/burning/tingling that goes down into my left foot. I have also been very tired off and on. I have been given the fibromyalgia dx but it's hard for me to believe that I can feel THIS bad and have so many "neurological" symptoms with fibro. I am VERY scared and when I start feeling bad I get the WORST anxiety which only makes my symptoms worse. Also, off and on I will get muscle twitches. The most recent being in my lower lip. It fasciculated constantly for about 2 months. This is all very scary. I don't think I mentioned that I have had 2 lumbar punctures (one this year, one 4 years ago) and they both were normal. I do not have the L'hermitte's sign or babinski reflex and my neuro exams have been normal. No loss of bladder function, no eyesight problems. Like I said, I do suffer from chronic anxiety and depression but when I'm feeling well I have nothing to be anxious about and don't seem to have any problems. I am currently taking: Lexapro, Depakote, Neurontin (200 mg at bedtime) and a steroid pack now for "sciatica". Can you shed any light on all this? I am about to drive myself and my poor family crazy!
I also forgot to mention that I have had every kind of bloodwork known to man including thyroid, B-12, sedrate, ACE, several Lyme titers, cbc's, etc, etc. Also, my tongue twitches occasionally, just like the rest of me.
wow... i am reading this outloud and my husband said... that sounds like you...
i have every symptom you have and more and have been diagnosed with fibro as well.
such a crazy mess of pain and what I call "weird" symptoms, such as chemical sensitivities, numbness and tingling in fingers, hands, arms, feet and pain that shoots all over the place, and many others. I've been to all kinds of specialists including a neuro guy because I thought MS would be very possible and it does run in my family. But my tests came back normal as well for MS.
I also have severe (but completely inconsistent from day to day) cognitive and memory issues. They are calling it fibro fog. Maybe. Maybe fibro truly IS the cause of all my problems.
I had finally resigned myself to that but last week when my fibro doctor noticed white spots on my legs (otherwise tan, but multiple spots of complete white), and noted that I have balance problems that cause me to fall (mostly I just veer off to the right and bang into the wall or whatever is in the way .. or just fall if nothing is there to catch me)... he suspects something called "dysautonomia" and suggested I see a neurologist and if that isn't conclusive to go to the mayo clinic.
He is the third doc to suggest another trip to the neuro and also the third doc to suggest mayo clinic. The other docs recently suggested a neuro because I have been dislexic in so many ways. Started out with numbers, then letters, then actual words (such as saying "left" when I mean "right"). And because of the numbness and tingling in my fingers and right arm...
I have a neuro appt in about a week and if that is not conclusive I am going to finally do what they are suggesting and try the mayo clinic.
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