Hello, so happy to find you all!
I'm Kathy, 55, on Vancouver Island. (also a UBC patient). I've been 'diagnosed' with probable multiple system atrophy, My symptoms however sound like everything ive read on gluten ataxia, plus i have a few that sound more like ga than msa. I went gluten-free March 25th 2013 and in the first two weeks noticed an immediate improvement in my speech: more volume, less slur, easier breathing, less choking. By the end of the third week i noticed a much reduced tremor.
In the 4th week I noticed that leg spasms and muscle twisting inward of my l leg was absent during the night, when it had woke me up consitantly before. During that time however, I have had two accidental ingestions of gluten. The first time i noticed my tremor went from very mild to very pronounced. It was still that way 10 days later when i had the second accidental ingestion of a small amount of flour. This time, during 10-36 hours after i noticed a spread of the tremor to include a quaking thru my legs, voice fading and slower, and a bit of slur returning. My left leg dragged for the whole day and leg spasms woke me up again. And my left leg and foot pulled inwards, I couldnt straighten it.
Now it is approx. 48 hours since the last gluten, and those symptoms have lessened. Can you kind folks tell me please from your own experience does this resemble gluten ataxia and the changes associated with going gluten-free? I had a gluten test in dec that was neg, however i'd been off it then since nov, then went back on. It felt like my symptoms were gradually getting worse since, so i decided to give it another go. I feel so on my own, drs dont seem to be informed, either of msa or gluten ataxia! Oh ps... is a strong urine smell a gluten symptom by any chance? I had it for a couple of years, no infection no diabetes etc, just drink more water say the drs. didnt help . But it dissapeared with the gluten-free diet, and returned with the gluten ingestion.
Thanks for your input, Kathy