All my genetic tests came back and a marker was found on a gene that makes my Spinobelellar Ataxia, a definate Ataxia 35. My UCLA nero who specializes in Ataxia said that coupled with my Celiac and Graves disease (both autoimmune diseases), she's pretty sure she can get our insurance to pay for experimental IVIG. They have previously turned us down as Ataxia has not been shown to respond to IVIG. She found studies on Ataxia 35 where four families in China had both Celiac and Ataxia 35 and responded to IVIG. I am not chinese, but she said they just haven't done the studies in America, there must be other people here and no one has looked for this. She gave a long speech on how it all works, something like the gluten protiens being mutated.....making this Ataxia an autoimmune Ataxia due to the....well, it was way above my head! It's not gluten Ataxia, but sort of a gene being marked for Ataxia but only affected when the gene for Celiac throws antibodies and the proteins from the bad antibodies mutate the gene and opens the blood brain barrier for the cerebellum...something like this, but don't quote me! It was way more than I could comprehend, but she was so excited and she is going to present this at some meeting(?) to address that all Celiac paitents be checked for a marker on this gene, which makes this not exactly gluten ataxia, but an ataxia caused by having Celiac and a gene marked for Ataxia???
None of the effected people in china shown Ataxia symptoms until mid-forties (that's me) and one was in his 60's. So, I need not worry about my two children with Celiac disease just now.
Anyway, it excites us when she gets a bit closer to getting our insurance to agree to try the IVIG. I've watched my friend's little girl go from being bedridden to running around the house and jumping on furniture when she's on her IVIG and I really want to give it a try!
Wow this is exciting news to hear. I’d love to know more. I have coeliac and gluten ataxia and my neurologist was involved in the research paper I think.
Keep us posted on how things go.
He’s talked to me about IVIG treatment but only tentatively as I haven’t had all my results back yet.
The only test I had one were the blood tests and MRI. I do not have gluten ataxia. I stopped the genetic tests because the cost was way to much. I know my ataxia is hereditary. Im not Chinese. But my ataxia did start showing around the age of 45. So what your saying is very interesting. I have hereditary Spinobelellar Ataxia. So the doctor said. I now have 2 MRI"s. 5 years apart. So I am hoping when I go to the doctor in May they have some more answers.
Robin, that's exciting news! If insurance will pay for IVIG, go for it! If you do, please keep us posted as to how it works out! Also Marie, I have Sporadic Cerebellar Ataxia (sporadic is idiopathic) as my neurologist has no idea what the cause is. I had genetic testing, which was negative. No one in my family (as far back as we know) has ataxia except me! We're a mystery, so that makes us special...,ha! ;o)
robin–are you seeing dr perlman? shes my doc there and suggested the same treatment for me for different reasons. ive not seen her in a while. maybe its time to go back.
Hi Maryseas,
Yes, I am seeing Dr. Pearlman, she is really great! After 10 years of bouncing from Nero to Nero, with no diagnosis, a friend offered a great PA who sent me to UCLA to see Dr. Pearlman, she diagnosed me on 2nd visit! On third visit, she knew exactly what type of Ayaxia I had: Spinocerebellar Ataxia 35! An amazing and devoted doctor and researcher! I feel so lucky to have her!
If your insurance company will pay for IVIG, I feel you should go back and give it a try! If you do, keep us posted!
Robin
I was diagnosed with SCA 35 last year after testing positive for the condition and am only 29 . I don’t know anything about this one as my specialist has told me that it’s a rare case for someone like me. I would like to know more and what am going to experience. He has said it is more than likely its inherited so he’s asked me to speak to my relatives and see if they could have a blood test done to see if it is genetic. could anyone give me any advice?
An autosomal dominant cerebellar ataxia type that is characterized by the adult-onset of progressive gait and limb ataxia, dysarthria, ocular dysmetria, intention tremor of hands, hyperreflexia and spasmodic torticollis.
Google SCA35…click on the link to 
I have seen a few posts on some Facebook Ataxia Support Groups re SCA35