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Ataxia snuck into my life little by little. Burst out of the box starting around 2013-14, along with gait issues and at times vertigo. I've detailed what happened in other areas of this site, so I'll just say now that it progressed over the following years until today I don't venture out as much as I used to. Totally got rid of the dismissive neurologist that finally had said to me "...sorry, there is nothing more I can do for you." Scores of bloodwork, procedures, brain MRIs and MRAs, referrals to specialists in NYC, etc., and although demyelination progressed as did my problems with electrical zaps, etc., no one would say that I had any particular disorder, especially not MS...but annual MRIs continued because a neurologist at NYPresbyterian in Manhattan said it had to be done...
Balance is a huge issue. I don't "turn" as I used to, instead turning my head first in the direction that I wish to go, fix my eyes on something and then slowly move my feet and body. That helps to keep me from struggling to maintain balance and not look as if I'd had booze in my morning coffee. Yes, I tried balance therapy but found after a few weeks that it was not helping.
I do have many medical problems that contribute, but I'll just say to you that you should insist on help with determining just what is the CAUSE of YOUR ataxia, and insist on a proactive plan for dealing with it. You may never get your total sense of control over your body but at least you can have a plan for helping yourself as best as possible. I'm considering the use of a rolator (but will look for a cool looking one!) but presently bring along my cane that has a neat "claw" that keeps it upright if I let go to examine something in a store. Has a "loop" that allows me to slip my hand through it and hangs around my wrist.
I'd like to hear from you, to learn what path you choose for addressing the challenges of ataxia.
I wish you the best.🌺
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Delia - thanks for your response - it contains helpful information. Yes, I have been to three teaching hospitals, many expensive tests only to be told I have Spinal, Cerebellar Ataxia, all test results were negative except for GAD65 blood work. (No one has told me the cause of Ataxia) - Neurologist who did Lumbar Puncture on me claimed he could get no Spinal Fluid during puncture - so I had to go back and have 2nd Lumbar Puncture in the Hospitaal and no one reviewed those results with me despite my repeated requests for same. Neurologist wanted to repeat Genetic Testing, but I understand that expensive test results would not change, so why rpeat it. One of the doctors wants me to have IVIG therapy because of the high result from the GAD65 test. To me the high GAD65 result is indicative of the presence of high infection in my body. My grandson told me to have mold testing done on my home (just bought it in 2016/20117 when I got sick) and evidence of Aspergillus mold was found but my Primary Care told me that "Aspergillus is everywhere". I am in a quandary how to go forward and I am losing my ability to effectively communicate or ask for help.