My brain scans are normal. No damage shows. Why?
That’s great news! I suggest you do a search for Gluten Ataxia. Don’t know if that’s the case. But it’s worth looking at. You could try doing a gluten free diet.
Thanks! I’ll check that out. My primary says it could be idiosynchratic.
I’ve seen several posts from people who say they have a diagnosis of Cerebellar Ataxia, and yet no Cerebellar Atrophy is visible.
I have mild Atrophy, and a diagnosis of Idiopathic Cerebellar Ataxia, with most general ataxia symptoms…but primarily eye problems and poor balance.
My first series of tests was in 2011, and inconclusive. Now, my Neurologist suggests renewed testing because there have several discoveries since then.
It is important to be tested, some Ataxias are caused by deficiencies and intervention at an early stage can make a big difference.
I too have Ataxia and my MRI taken several years ago showed only mild age related (I was 70 at the time) atrophy. Nevertheless I had sufficient ataxic symptoms to confirm my diagnosis -typical ataxic gate,
loss of balance, sporadic and non-predictive right hand tremble, frequent urination, and poor response to foot and ankle stimulus-.
I walk several km. every day with the aid of a rollator and lift weights every other day; progression has been very slow however I don’t know if exercise has affected my ataxia in any way but it certainly hasn’t hurt and helps to maintain my overall health. I also eat a typical mediterranean diet with the exception of meat and have done so for most of my life.
Like Athlete my MRI showed a mild age related Atrophy. After doing a comparison of my sisters blood sample all the “experts” agreed that I have Niemann-Pick 1 (NPC1).
I usually count steps rather than kms, to me it sounds more impressive
Recently I was able to enjoy a run of active days…most unusual for me, and psychologically I felt a real boost to morale I’m all too aware being inactive can ease the situation…but it makes it so much harder to get going again…
My ‘diet’ isn’t as bad as it used to be…I’m much more aware of what I choose to eat…and try to maintain a reasonable balance between nutrition and treats
Unfortunately I don’t see a neurologist at this time. The nursing home and my Dr. have written me off I had extensive testing years ago. My ataxia is quite severe. I’ve never had a diagnosis other than (neurdegenerative). I had to diagnosis the ataxia on my own and don’t know which kind. It’s unbelievable what I went through. The second neurologist I saw said to me the first time she saw me was “Why are you in that wheelchair?”. HELLO? Then she said “” Stand up!". I did and almost took both of us down. It’s a challenge. I still don’t have a diiagnosis. The Mayo Clinic turned me down . . .Twice!
'“Stand up”?? That’s a messed up request from a supposed doctor.
Sometimes the scans are always “within normal limits” but are not necessarily normal for YOU. Sometimes the damage isn’t visible until you are dead. No neurologist with any sense would consider visible degeneration on an MRI the primary diagnostic criteria. And there are lots of different kinds of ataxia. Some genetic, some acquired, some diet- or environment- related.
My guess is that you have a goofball dr. who is thrown off by something in your records, history, or presentation that is not fitting in with their expectations for an ataxic disorder.
You should try to start fresh with an open minded dr.