Thread: Ataxia
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Old 03-02-2014, 11:27 AM
Moonspell67 Moonspell67 is offline
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Join Date: Feb 2014
Location: Saskatchewan, CAN
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10 yr Member
Moonspell67 Moonspell67 is offline
Junior Member
 
Join Date: Feb 2014
Location: Saskatchewan, CAN
Posts: 15
10 yr Member
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Quote:
Originally Posted by Linzi grant View Post
We live in hull,..England. If ther are any doctors maybe willing to please please help. Thanks again
I was born with ataxia but showed no symptoms for 15-16 years; My Mom and Grandfather and many relatives have/had ataxia, so I knew what to test for. I tested positive in 2002. All the symptoms you listed I live with daily. I have spinal cerebellar ataxia-2 (there are 16 types of sca). But ataxia comes in many forms (friedrichs, telangestica(?) etc) and severities. All my doctors and specialists told me to buck up, there is no cure or treatment. Cold. I'd try to get a correct and final diagnosis (I'm sure you have tried) and from there you can meet others with the same problems and hopefully some sort of easement. For example I take coQ10 (coQH) which helps in a minor way. Magnesium pills and epsom salt baths help with cramps. I have learned to avoid certain foods . I basically eat very healthy foods, exercise a lot, and avoid toxins. I have slowed the progression but I still get worse daily. The most depressing thing for me (besides losing my lifestyle) has been the way I have been treated by the medical workers. They have been cold, rude, and have told me often that they can't help me at all and please quit coming and wasting their time. If you can differentiate between an hereditary ataxia and a gluten ataxia, you have started to treat the problem. Here in Canada, they won't perform certain medical treatment such as MRI's- I have cousins that had to go to Austria or China for this. I went to China for stem cells (which did nothing for me yet wasted a pile of money).
Out of all the symptoms you listed, I share them all except for a wandering arm. I have cramps, speech issues, bad gait, balance loss, often send food down the wrong tube, terrible coordination, vision problems, I have trouble carrying weights....
I hope this may set you on the right path; I hope you can get a diagnosis and from there you can get some tips on living with ataxia from other sufferers.
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"Thanks for this!" says:
Linzi grant (03-05-2014)