Has anyone here had Cerebellar Ataxia?

I haven’t been dx with anything like that, but I do have balance issues and difficulties word finding/stuttering. For me, it’s directly related to toxin overload. Balance issues were the worst when in mold exposure and detoxing mold.

Have you ever taken Cholestyramine as a binder? I would at least try it for maybe a month to determine if it might be toxins causing the inflammation.

Girlie, if I could get your email to send you a copy of the report?

sdarrah I have had ataxia issues now for quite some time. I was never officially diagnosed with Cerebellar ataxia. Just wondering what the criteria is for that diagnosis. My last MRI was last August. Any info would be appreciated . Thanks

sdarrah Last year when I was in the ER they diagnosed me with ataxia..I was having trouble walking,dizzy and balance problems. My symptoms seem to be episodic...far worse sometimes than others..currently having balance, walking and talking issues..at times resembling stroke like symptoms...different opinions as to whether it’s caused by Lyme, celiac disease(which I have) and yes that does affect the brain as well as the gut... very frustrating journey to say the least...have you been guided on how to move forward yet? I had IV Rocephin two years ago but I didn’t have these symptoms then.

sdarrah would you mind if I emailed you at some time? I just have a couple questions.

You would have to enable your email
Address.

blueize said...
sdarrah Last year when I was in the ER they diagnosed me with ataxia..I was having trouble walking,dizzy and balance problems. My symptoms seem to be episodic...far worse sometimes than others..currently having balance, walking and talking issues..at times resembling stroke like symptoms...different opinions as to whether it’s caused by Lyme, celiac disease(which I have) and yes that does affect the brain as well as the gut... very frustrating journey to say the least...have you been guided on how to move forward yet? I had IV Rocephin two years ago but I didn’t have these symptoms then.

Are you on a gluten free diet?
That should take care of your brain being affected from Celiac

blueize said...
Yes I am on a gluten free diet for many years.I have seen one of the top docs at Columbia regarding celiac. The current thinking is that even trace amounts from cross contamination or what they legally allow in so called “gluten free” foods can cause damage. Add to that trying to find out if meds contain gluten!

That's interesting. My son also has Celiac disease but since going on the gluten free diet, he has no symptoms anymore.
Fresh Fruits and vegetables shouldn't have contamination...right? Or rice, chicken...etc.?
I can see something like pasta - if it's in a shared facility that produces regular pasta.

blueize said...
Since I have been gluten free for many years I am free from the gastro symptoms and I can tell if I do eat something by mistake . You are right the best diet is fresh foods .. chicken, veggies ,fresh fruit ,rice potatoes....it’s pretty easy to adapt to. For me the real problem are the meds...most drugs I have to get compounded and that becomes $$$$! Most companies will not guarantee their products are gluten free due to possible cross contammination.When did your son find out he was celiac?

It took awhile. When he was around 4 years old, I took him to the Dr. because his hair was falling out and he was winded when running around. The (stupid) Dr. said "Is he tired...or is he lazy?"
What an idiot. What 4 year old is lazy...
Tests were done...nothing showed up - (including blood sugar)

Then we switched Docs and that Doc found out his hemoglobin and ferritin levels were very low. So he told me to make sure he ate meat every day...and in particular liver. My son has always hated meat....so I knew that wasn't going to happen. (He is in his 20's now and still won't eat meat). I bought iron supplements and he took them daily.
His hemoglobin did come up...but not his ferritin.
The other symptom he had - that we didn't know was related - was constipation...since a baby.

Several years later...in his teens - there was a locum at the medical office...right away she asked if he had been tested for celiac disease. No, he hadn't. And sure enough his Transglutaminase IgA antibodies were so high - they were off the chart. We immediately put him on a non-gluten diet.
He was sent to a pediatric Dr. in the city and he confirmed it was celiac...but the gold standard was to put a scope down his throat and take a sample of the tissue of his small intestine.
None of us wanted him to have that test. To do it, he would have to load up on gluten and literally damage his intestine in order for the biopsy to be valid.
We made a deal with him, that no biopsy if he promised to accept the blood test diagnosis and be gluten free the rest of his life. He agreed.

It took something like a year for his gluten antibodies to go down to normal level...and voila...his bowel movements became normal.

Sorry for the long dissertation...lol.

blueize said...
sdarrah Last year when I was in the ER they diagnosed me with ataxia..I was having trouble walking,dizzy and balance problems. My symptoms seem to be episodic...far worse sometimes than others..currently having balance, walking and talking issues..at times resembling stroke like symptoms...different opinions as to whether it’s caused by Lyme, celiac disease(which I have) and yes that does affect the brain as well as the gut... very frustrating journey to say the least...have you been guided on how to move forward yet? I had IV Rocephin two years ago but I didn’t have these symptoms then.

** Hi blueize I am curious how your symptoms of balance and talking have improved? I am thinking I have Gluten Ataxia, which is all the symptoms I have and it starts mild and then progresses, which is my case. You mentioned you have celiac did your Doctor diagnose you, and would that Doctor attribute your symptoms to Gluten Ataxia?

sdarrah.... I was diagnosed celiac in 2008 through bloodwork and endoscopic biopsy. I have never had any doctor tell me for sure that is the cause of my symptoms. I follow a very strict gluten free diet but as I said before even trace amounts can be present in “so called” gluten free food. The regulations are not that strict and then there is the whole issue of medicine and supplements containing gluten. I do the best I can to avoid it. To further add to the confusion I had ataxia and some related issues when I first got sick with Lyme and babesia. When I feel I have been “glutenized” it takes me awhile to recover.Hope this helps....you can always get tested to rule out celiac.

Yes I am tested regularly and my numbers are fine. My antibodies were extremely high before I was diagnosed as well.