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a medical (not foot-related) question for Sharon...

Posted by Suzanne D. on 10/09/03 at 21:29 (133308)

Hello, Sharon. May I ask you a question here? And then you may reply to me either here or on the Social Board; it doesn't matter which to me. I just know you have so much medical understanding and resources and are always willing to share.

I almost feel too 'ignorant' to ask the question, but here goes. I had a disturbing call tonight from a good friend with whom I used to teach. She was telling me about another good friend and former co-worker, a woman in her early 40's who has a rare disease just now diagnosed. It is in the 'family' with MS and lupus, and for the life of me, I can't remember the name. It begins with 'poly' and is an autoimmune disease which attacks the muscles. I understood it began with poly because it is attacking both her arms and legs.

At first, her GP thought she had rheumatoid arthritis, but after going to a specialist and having a muscle biopsy (something new to me!) as well as some other tests, she has been given this diagnosis. She is now in the hospital and is on 5 medicines.

I have been sitting here worrying and thinking about her and wondering what her future will hold. I don't want you to go to any work, but if you know what this is and can give me any information about it, would you mind? I realize my description has been sketchy, and so, like I said, don't go to any work to try to figure it out. I just thought I would ask.

Thanks for your time, Sharon!
Suzanne :)

Re: a medical (not foot-related) question for Sharon...

John H on 10/09/03 at 21:36 (133310)

Hope it is not ALS. My spelling will be goofy but amitrophic laterial schlerosis. This is a muscle wasting disease that can start anywhere and for the most part is fatal although some people live for years with it. The famous scientist Steven ------- who is in a wheelchair and basically communicates with a computer has had it for many years. Better knows as Lou Gherig's disease.

Re: a medical (not foot-related) question for Sharon...

Suzanne D. on 10/09/03 at 22:37 (133318)

John, I hope not, too. My friend was a little sketchy about the information as they are just hearing about it, and no one is familiar with what they are hearing. I am going to try to find out more tomorrow. I'll try to at least have the name of the disease.

Thanks for your response.
Suzanne

Re: a medical (not foot-related) question for Sharon...

karenL on 10/09/03 at 23:49 (133336)

Suzannen,

are you thinking [perhaps of PolyNeuropathy? poly meaning many neuro meaning of the nerves so many nerves? CPIDPN or chronic Poly Inflammatory Debilitating Peripheal Neuropathy usually attacks the auto immune system due to an overload of protein in the body which attack the nerves. It is sometimes put in the same category as Lou Gerhig's disease or ALS as someone else posted also.

KarenL

Re: a medical (not foot-related) question for Sharon...

Dorothy on 10/10/03 at 00:45 (133346)

Hawking.

Re: a medical (not foot-related) question for Sharon...

john h on 10/10/03 at 08:23 (133367)

Now it comes to me. Steven Hawkins has the disease. Unbelievable. He cannot talk, Can hardly move and is still one of the most brilliant minds on earth. That is what so scary about this disease. Your mind is never effected. He is one of the few people that continues to survive this disease after a couple of decades.

Re: a medical (not foot-related) question for Sharon...

Sharon W on 10/10/03 at 10:12 (133390)

Suzanne,

The name you are looking for is PROBABLY 'polymyositis,' a disease that causes weakness of the muscles close to the trunk of the body. It can cause trouble swallowing, which could be the reason why your friend's friend is in the hospital.

Here are a couple of links, if you want to read up on it:

http://www.ninds.nih.gov/health_and_medical/disorders/polymyos_doc.htm

http://www.nlm.nih.gov/medlineplus/ency/article/000428.htm

I'm sorry, Suzanne, but since I don't really even know the name of her condition this might just be a wild goose chase! If you learn a few more details, I might be able to tell more.

Sharon
.

Re: a medical (not foot-related) question for Sharon...

Sharon W on 10/10/03 at 10:32 (133395)

Karen,

There are many types of polyneuropathy; for example, mine is 'idiopathic'.

Sharon
.