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Just diagnosed

Patt_c1 Message
20 Apr 2009, 06:38 PM

I've just been diagnosed with MSA and I am trying to get further information from people who have this. I've gone without a diagnosis since 2006 when suddenly it struck. My doctor finally did a PET scan and found out that the cerebral area of my brain is slow in accepting the radio active glucose. Can anyone describe your symptoms. Thanks a lot.
naaktl1 Message
20 Apr 2009, 11:43 PM

I am glad you've been diagnosed so you can begin to manage your symptoms, and I wish you the best with this. My companion has MSA, he was diagnosed 11 years ago and has beat the odds since then, but now we fear the end is near. The symptoms from which he has suffered include decreased stability and balance when walking, standing, and turning; blurred (double) vision; problems with swallowing (he has had to re-invent how to swallow to compensate - liquids are more difficult than solids); occasional stiff body movements and occassional dizziness; but most of all, breathing difficulties due to atrophy of chest walls - he uses a BI-PAP machine much of the day now, and always every night. One website we have found very helpful is www.shy-drager.org - it is full of all kinds of information about MSA and very easy to understand. If we can answer any specific questions for you please let me know. I will try to check the discussion board.