As some of you may know, after about five or so years and many scans, blood tests (genetics) and visits to my GP(s), physio(s) and Neurologist(s), I am still without a firm diagnosis regarding my balance, coordination and other problems. It is without doubt that I am affected by ataxia(s) - just no one seems to want to put a definate name to the type of ataxia I have. My father has been told he has CA and that I likely have CA but I have not personally had CA confirmed as such yet. I was also told at one point that although I do not have MS, I may as well have as my 'symptoms' or 'problems' affect me in a similar way (not my words - from a doctor and in passing')! I also know that my ataxia is progressive and degenerative.
So, as I'm sure can be imagined, any news about my 'condition' is good news - positive or negative. This is because as the news comes in, I am (it seems) getting closer to a final result - good or bad.
A week or so before christmas I went to see my GP because of very bad muscular pain I get in my arms, legs and particularly across my shoulders and nape of my neck - I often have poor rotation in either or both my upper body or neck due to this. I was particularly concerned about muscle sitffness when 'driving' my mobility scooter as I do not wish to endanger myself or others. After a bit of an examination and a chat, my GP said that the muscular pain I am getting is down to my Fibromyalgia. I was a little suprised / taken back at this as I have been saying for months (to GP(s)) that as a child / teenager I was told I had Fibrositis (rare in youngsters) and have had this all but dismissed! Also, I knew (and told GP(s)) 'Fibrositis' to be a somewhat archaic term and is now counted as Fibromyalgia. The GP told me that my records showed that I have had Fibromyalia going back quite some time. (Vindication?)
So, I guess that what I want to ask is this; do any of you also have or know anyone else with a diagnosis of Fibromyalgia (as well as ataxia)?
Further to the whole Fibromyalgia thing, I told my GP (again) that I have been getting 'needle point' pains and some 'pins and needles' around my body - mostly in my hands and arms but also in my legs and back. The GP thought this to be a neurological problem related to ataxia and was about to refer me to my neurologist but I told her not to bother as I would be seeing said neurologist in January (gone) and would talk to him then about the 'needle point' pains. I was asked (again) to try to keep a diary of the pains to relate to the neurologist but I already had a 'study' so to say that I had kept over a month showing dates and times and durations of those pains.
I saw the neurologist in January and talked about the 'needle point' pains amongst other stuff and he arranged an Electromyography (EMG) for me.
Today I had my EMG and was very happy to find out that, as far as the doctor conducting the test was concerned, the EMG went very well and did not show any nerve ending deterioration or other problems.
So! More good news! I have, of course, to wait for any testing / analysis of the records taken to come back from my neurologist - all seems good though. :)
Well! That's about all for now - I just wanted to update folk on my 'condition' and actions taken and to ask the question (see above)!
Take care all and try to stay positive. Kind regards,
Hmmm! This (OP / OT) may have been accidentally double posted to the forums - 'tintanet seems to be 'playing up'!
If it is a double 'thread' I would ask one of our very considerate 'mods' to remove the other one!