Ataxia?

[ZenGrowing]

I had to relearn walking twice as a young child.  Even today, I could not walk a straight line to save my soul.  Periodically I have to use a cane, and twice now, for a year or more each time, I've needed to use a wheelchair. The doctors have never been able to find a definite cause, though they've speculated on everything from MS to spinal impingement exaccerbated by stress.  Could this possibly be ataxia?  How does ataxia present?

[cyclinglady]

Welcome!  The first step is doing some research in gluten ataxia and then ask for your doctor for a celiac antibodies test (full panel and not just the cheaper screening test).  Gluten ataxia is very new and many doctors have not heard about it.  

Here is some information about gluten ataxia:

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Testing:

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From what I understand a very strict gluten free diet is required which can be hard, but not impossible.  (As a person with celiac, I am on a strict diet).  Neurological damage can take a very long time to heal.  Often a year or two.  

I hope other members who have had first-hand experience can help you.  I wish you well!  

[ravenwoodglass]

I had severe ataxia before diagnosis. For me the balance issues felt like I was walking on a ship in rough seas. Ataxia started in early childhood but my problems with walking as a child were attributed to some congenital malformations that were corrected. Turned out that wasn't the case. I was undiagnosed for over 40 years and eventually I also had trouble with speech, and even swallowing. They thought I had MS also. Ataxia causes brain lesions similiar to the ones found in MS but a spinal tap didn't show the 'debris' that is found with it. The doctors then told me it was nothing and 'I wanted to be sick'!!!

I also had the skin form of celiac (DH) and for the last 15 years almost constant D.

I did heal but it did take time. However by the six month point I caught myself running up the stairs and when I realized what I had done I sat on the top step and cryed.  I was far from fully healed though that took a few years and the help of a couple of good Physical Therapists.  I still have issues with balance and speech if I get glutened but it does resolve now in a couple weeks.

Did they do an MRI with you? If that is what lead them to think it was MS do be aware that not all Neuro Docs are aware of UBOs (Unidentified Bright Objects) and that they are associated with celiac.  Do get the full celiac screen that Cyclinglady advised and keep eating gluten until all celiac related testing is done. It wouldn't hurt to give the diet a good and very strict try after celiac testing is finished.

I hope you are doing better soon.