# Can't Diagnose **URL:** \ **Category:** Support\ **Tags:** stories\ **Created:** [August 1, 2026, 9:47pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380 "2026-08-01T21:47:00Z")\ **Posts on this page:** 15\ **Page:** 1
**Author:** ![Derek828](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/derek828/32/6246_2.png) [@Derek828](https://forum.livingwithataxia.org/u/Derek828)\ **Post date:** [August 1, 2026, 9:47pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/1 "2026-08-01T21:47:00Z")
Anyone else here do genetic testing, an MRI, an EMG, and consistently meet with their neurologist, only for them to tell you that they cannot give you a diagnosis, or is this just me? Mind you I have had progressive lower extremity weakness (including footdrop) since my late 30s, progressing to complete lack of balance, and relegation to a rollator for walking. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [August 2, 2026, 12:44am UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/2 "2026-08-02T00:44:08Z")
Did they find any problem with your cerebellum? ---
**Author:** ![Derek828](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/derek828/32/6246_2.png) [@Derek828](https://forum.livingwithataxia.org/u/Derek828)\ **Post date:** [August 2, 2026, 12:45am UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/3 "2026-08-02T00:45:55Z")
Nothing as of yet. Everything was normal. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [August 2, 2026, 12:50am UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/4 "2026-08-02T00:50:38Z")
If it were the cerebellum they would see that quickly via MRI. There is another similar problem called Gluten Ataxia. Try a Gluten free diet. ---
**Author:** ![Derek828](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/derek828/32/6246_2.png) [@Derek828](https://forum.livingwithataxia.org/u/Derek828)\ **Post date:** [August 2, 2026, 12:51am UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/5 "2026-08-02T00:51:46Z")
I appreciate the wisdom. Thank you. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [August 2, 2026, 12:54am UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/6 "2026-08-02T00:54:51Z")
Don’t expect immediate results from a Gluten free diet. Usually takes a few months to see any results if that’s the culprit. ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [August 2, 2026, 9:00pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/7 "2026-08-02T21:00:53Z")
I had a genetic test with my sister and now it has been determine I have Niemann pick Type C instead of SCA 2. I should have known something was up, my cerebellum never changed ---
**Author:** ![Derek828](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/derek828/32/6246_2.png) [@Derek828](https://forum.livingwithataxia.org/u/Derek828)\ **Post date:** [August 2, 2026, 10:07pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/8 "2026-08-02T22:07:37Z")
For me they found nothing in the genetic testing. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [August 2, 2026, 10:17pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/9 "2026-08-02T22:17:08Z")
Did you look up Gluten-free diet on the internet? A friend of mine is on that diet. Plenty to eat and much variety. ---
**Author:** ![Derek828](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/derek828/32/6246_2.png) [@Derek828](https://forum.livingwithataxia.org/u/Derek828)\ **Post date:** [August 2, 2026, 10:38pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/10 "2026-08-02T22:38:08Z")
Looking that up today. ---
**Author:** ![Cirrus](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/cirrus/32/5804_2.png) [@Cirrus](https://forum.livingwithataxia.org/u/Cirrus)\ **Post date:** [August 5, 2026, 1:43pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/11 "2026-08-05T13:43:58Z")
Hi Derek, Welcome! I agree that it is worthwhile to test for gluten sensitivity-you can ask your PCP or neurologist if they would consider running a celiac panel before you consider going gluten free otherwise going gluten free before testing will skew the true results. When I was tested, I was one point below celiac a few years ago (highly gluten sensitive) went on a gluten free diet and was not expecting much difference. Over time I was shocked at how much I improved (over 90+%) from where I was. I have not been diagnosed with gluten ataxia officially yet, but my neurologist said the hallmark is substantial improvement and I think this qualifies for sure. My balance was terrible at the beginning-felt like I was being thrown around. Now I walk unaided around the house with a wobble, and just use a walking stick when I’m out in public since I can’t stop on a dime. And my cerebellum showed very little atrophy and has remained stable. It has been quite the journey but don’t give up on finding the cause. It’s out there. ---
**Author:** ![kvkiwi](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/kvkiwi/32/6234_2.png) [@kvkiwi](https://forum.livingwithataxia.org/u/kvkiwi)\ **Post date:** [August 5, 2026, 2:07pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/12 "2026-08-05T14:07:33Z")
Same for me. Spinocerebella ataxia has been diagnosed based on symptoms and testing of reflexes etc. Scans a genetic testing did not reveal anything. Frustrating eh. ---
**Author:** ![maryseas](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/maryseas/32/173_2.png) [@maryseas](https://forum.livingwithataxia.org/u/maryseas)\ **Post date:** [August 5, 2026, 11:12pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/13 "2026-08-05T23:12:50Z")
I’ve had 5 MRI’s, all normal, a good neuro opthamalogist, Bad neurologists and one of the best in the country, Susan Perlman, 4 or 5 genetic tests and a genome test- all negative. Dr Perlman at UCLA after 25 yrs of looking found I had SCA27B with a gene test at U. if Chicago ( very few places can do this accurately). I was diagnosed early by Dr Perlman as having SCA (type unknown) 25 yrs ago. Perhaps a more experienced specialist will serve you better. Not all docs are the same. BTW, drop foot isn’t a symptom I heard of as being part of SCA. ---
**Author:** ![Derek828](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/derek828/32/6246_2.png) [@Derek828](https://forum.livingwithataxia.org/u/Derek828)\ **Post date:** [August 6, 2026, 3:27am UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/14 "2026-08-06T03:27:58Z")
haven’t thought of that. i just assumed my neurologist was competent. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [August 6, 2026, 8:16pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380/15 "2026-08-06T20:16:16Z")
Not all neuro docs know of SCA. They know of Ataxia but not SCA. It is very rare and most docs will never see a case of it