Hi, I was diagnosed with MS in 1982, in 2000 the doctor ran a lot of tests on me, including genetic testing. They told me that I have Cerebellar Degeneration and it was a rare disease. The doctors also told me that there was nothing that can be done for it at this time. I have been trying to find out some information about it, with no luck. Can someone help me out on finding some information on this, and how rare it is? My doctor told me to go to the National Ataxia Foundation Website, which I did, but didn't know what to look for.
This 1 and a half years old but anyone else reading may find this snippet interesting. The original poster with MS and Ataxia didn't know what to ask at the National Ataxia website. So I gave it some extra thought as one of my siblings has MS.
The answer of course would be in the search window start typing in symptoms, take notes and follow links; see if the following may apply to you. Ask how rare is ataxia for example. Simple questions can get you miles; you can also search for literature that contains a specific term by putting that word in quotes e.g Literature search new "MS treatments"; will get articles and fewer websites like yahoo answers that rely on you failing an intelligence test to join.
"Ataxia is a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements. A person with persistent ataxia may have damage in the part of the brain that controls muscle coordination - the cerebellum. Ataxia may have several causes, including multiple sclerosis, a head injury, alcohol abuse, stroke, cerebral palsy, a faulty gene, or a tumor. Ataxia may also be a symptom of incoordination linked to infections.
There are different types of ataxias including Friedreich's ataxia and spinocerebellar ataxia type 6. A less common type is ataxia telangiectasia. According to Ataxia UK, there are over 40 known forms of inherited ataxias - new forms continue to be identified as scientific techniques improve."
My dearest sister has MS (slow progressive type: 6 months followed by rapid worsening for 4-8 weeks and that becomes her new benchmark for the next episode) and watching her deteriorate from year to year is absolutely heartbreaking (one of the kindest most generous, intelligent, persons I have ever met).
Never put off treatment by telling yourself 'just 6 more weeks... '.
I urge anyone diagnosed with MS to do all the reading you can so you can be as well informed as possible.
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