Hello everyone and thank you for the addition to this group . Allow me to introduce myself am a 57-year-old female athlete weightlifter an avid runner . I was diagnosed with ataxia early in 2015 and have been following a Paleo diet for two years Gluten intolerant and also adopted FODMAP as well. I work out at least five days a week and have Incorporated hot yoga but the balance poses are modified
I feel very fortunate that this is not progressed further just yet but my main issue is walking and balance not being able to do some of the things that I used to do but I am determined not to let the disease control me I’m going to control it. Things like walking in the sand on the beach are extremely challenging and sometimes narrow sidewalks are very hard to maneuver.
I feel that food has a lot to do with managing this so I am very careful about making sure that I am eating fresh food not processed food and dining out make the restaurant well aware of my gluten allergy
I’ve been seen at UCSF by the neurology department and a Doctor who has been studying ataxia for many years spent two hours having me perform various tests . I had CT scan, showed normal and a endoscopy was performed and the gluten allergy was diagnosed. Because my neuro tests are showing ataxia symptoms the diagnosis was made based based on my inability to balance and gait and imbalance.
My question was my neurologist suggested IV IG treatments to help with the symptoms and has anyone here experience success with these treatments and if so I would appreciate hearing about them . I have done extensive search on IV IG but it never been able to make contact with actual patients that have the treatment
Dear Shorty, A HUGE welcome to this site! To me it sounds like you may have Gluten Ataxia (has your neurologist ever mentioned this?), which would be autoimmune and, therefore, IV IG treatments may help you. I have Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7/progressive-NOT autoimmune) so they'd be of no help to me. I'm not a medical proffessional, just speaking from what I've heard and read. Also, I give you loads of credit for not letting your ataxia get the best of you! KUDOS!!!! ;o)
I had many IV IG treatments. My Ataxia thought to belief as a result of SLE which I do have quite a long history with and life threatening incidents.
Treatments are very expensive and after a while of not seeing any appreciable difference we stopped taking. Studies that I have read there are a small number of men who benefited.
The question to take the treatments is a personal decision.
Medicare would pay only, so that means the supplemental insurance would use that decision not to pay, only if certain tests met their protocols. I had a spinal tab and that along with me SLE history they allowed. me the opportunity.
My CT scan shows very little possible damage in the Cerebellum, yet Ataxia symptoms did progress.
Since I am now a 70 yr old I have decided for myself that unless there is a big break through in research I will take on this adventure just as I use to take on a pack packing trip for more than a week at a time in the high Sierra's.
I have come to believe it is what it is so go for what I can manage.
thank you all! Yes my ataxia is a gluten ataxia but even being very diligent about food I still have balance issues. I have to admit am on the fence about IVIG due to lack of proven benefits. Thank you for your support
There was a study done by the Mayo Clinic in Rochester, MN using IV IG on patients, men, who had episodic ataxia. The results proved good for a number of the men.
I would like to meet you also, I live in Oakland and see dr. Nelson at Ucsf... I have sca3 and it was diagnosised in 2014 due to balance and gait issues and a family history... I am interested in hearing what effects the treatment has if you do decide to do it! My name is Lynn - I workout often and I continue to coach volleyball and I am determined to have the most normal life I can have! This is just something else to concur!
As I understand it, the ataxia symptom of gluten ataxia cannot be improved but eliminating ataxia completely will stop further deterioration of the cerebellum.
i live in ny. last year i went to see Dr. Z. i liked her, felt very comfortable. i just received a call from them that the meds are available. i can't run to Fla. but she will let my neuro know if they work and maybe i can get them here. please let me know if they work . my name is lorraine. good luck. i was diagnosed in 2001 with sca2. just keep exercising. when your body has had enough REST. don't overdo.
Sorry. Just saw this now. I have CA, induced by autoimmunity and have had numerous IVIG treatments-- 25 gram each month by IV. Is it making me better? Not dramatically although my neuro think I would be worse w/o it. Good Luck N
Sorry that I did not look you up in NYC when I was there. I have never met or seen anyone with ataxia.
Any luck with acetyl DL luecine?? Who is Dr. Z and is here a way of having IVIG in NYC? (I have no medical insurance there.) N Lorraine Lerner said:
hi shorty,
i live in ny. last year i went to see Dr. Z. i liked her, felt very comfortable. i just received a call from them that the meds are available. i can't run to Fla. but she will let my neuro know if they work and maybe i can get them here. please let me know if they work . my name is lorraine. good luck. i was diagnosed in 2001 with sca2. just keep exercising. when your body has had enough REST. don't overdo.