I have been diagnosed with a mild case of cerebellum ataxia by a "regular" neurologist who knew nothing about gluten. I have an appointment in August with the UCLA Ataxia Center which is supposed to be one of the best in the US. Will report afterward.
I have a feeling we on this forum and others will be the grassroots movement that will bring about the education for these doctors and an eventual cure. I bring all my forum links from this site and American Ataxia to my doctors with the hopes that, even though they are so busy, they will want to learn more about gluten ataxia and ataxia.
You are finally finding out what is really wrong, not self-diagnosing. I am glad you are seeing experts now.
Maybe there isn't a treatment or a cure, but I think it's important to be seen as needed by Neurologists who are educated in this disease. The more of us who demand answers the more likely that a treatment will be found.
It's like my Corneal Disease- my support group (Fuch's Friends) got so demanding of doctors for better Corneal Transplants that a few of the World Class Corneal Surgeons learned a new type called DMEK from the Pioneer who developed the technique,(Dr. Melles from Rotterdam) to do DMEK partial corneal transplants. They give good vision in 3 months rather than the old method which took 6-12 months, and before that full transplants that took 1-2 years.
I hope that happens with Ataxias and other Movement Disorders. Support groups like this are powerful. Fuchs Friends only has 3000 members but they have accomplished a lot through education and demanding better from the medical community.
how long did you have to wait to get into John Hopkins? I figured it would be a couple months or so but someone on here posted that they had to wait like 3 years to get into their nearest university ataxia center
RRose said:
You should see an ataxia specialist. The ones at Johns Hopkins are very good. They are very knowledgable about current research. When I first saw a regular neurologist, he told me exercise great but would not help ataxians at all. The folks at Johns Hopkins can tell you that is just not true. There are things you can do to help. While there is no cure, it certainly is empowering to know that you don't have to sit by and let this take control. You are headed to a great center. Good luck!
My mother and I both went. We were participating in several clinical trials they had going on at the time. We went about 2months after we contacted them and were there for 3days of testing. Not the usual experience for going to an ataxia center. This was a couple of years ago. I’m not sure what is like currently.
mommy_medic said:
how long did you have to wait to get into John Hopkins? I figured it would be a couple months or so but someone on here posted that they had to wait like 3 years to get into their nearest university ataxia center
RRose said:
You should see an ataxia specialist. The ones at Johns Hopkins are very good. They are very knowledgable about current research. When I first saw a regular neurologist, he told me exercise great but would not help ataxians at all. The folks at Johns Hopkins can tell you that is just not true. There are things you can do to help. While there is no cure, it certainly is empowering to know that you don’t have to sit by and let this take control. You are headed to a great center. Good luck!
I just contacted the Ataxia Center at Johns Hopkins. I will authorize release of my medical records at the next neurologists appointment so I can get an appointment. I