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Old 08-21-2012, 08:41 PM   #1
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Unhappy inclusion body myositis

Well, first I thought I had lupus myositis, then polymyositis, then my EMG was suggestive of IBM. I have to wait a whole month for a biopsy of muscle. There is a big difference in these Dx, as IBM has no treatment/no cure. Does anyone know how good EMG recordings are at predicting the TYPE of myositis you have? I hope my EMG is wrong about the IBM, but I know the myositis is correct. I would just like to hope there is something I can do to treat it. Am going to try to get my biopsy moved up for a quicker answer.

 
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Old 12-01-2012, 09:54 PM   #2
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Re: inclusion body myositis

Quote:
Originally Posted by ladybud View Post
Well, first I thought I had lupus myositis, then polymyositis, then my EMG was suggestive of IBM. I have to wait a whole month for a biopsy of muscle. There is a big difference in these Dx, as IBM has no treatment/no cure. Does anyone know how good EMG recordings are at predicting the TYPE of myositis you have? I hope my EMG is wrong about the IBM, but I know the myositis is correct. I would just like to hope there is something I can do to treat it. Am going to try to get my biopsy moved up for a quicker answer.



Hi ladybud, I just saw this thread and you have helped me so often, that I wanted to see if you ever got a definitive diagnosis, muscle biopsy? I was looking up muscle biopsy for my friend, & was sorry to see this was you suffering. Thanks, gmak

 
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Old 12-02-2012, 02:49 PM   #3
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Re: inclusion body myositis

Thanks for your concern! I saw a neurologist at the Univ. of CO and she thought it was not inclusion body myosotis based on my exam. She thought the biopsy was optional since my enzymes are not terribly high, so I decided not to put myself thru more surgeries and pain. She said it would be a 4 inch incision, and at this point, I have been through enough invasive things, I thought it best not to do it. I am starting a new med for the RA and hoping that calms down the myosotis too. Thanks for your kind words. I am glad I have been of some help to you.

 
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Old 12-02-2012, 04:43 PM   #4
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Re: inclusion body myositis

Ladybud, you have been a great help to me. Maybe ask your dr but there was a neurologist in houston, in the medical center that did a muscle biopsy on a dear friend years ago when they called polymyositis, dermatomyositis. He dx her with dermatomyositis & he (patten was his name) said that all myositis had a component of lipid storage disease. He told her to take L- carnitine, i dont remember the dosage but she was dramatically better. Of course with lupus, RA etc, you would never take w/o asking your drs. I thought you may find it interesting. Thanks, gmak

Last edited by gmak; 12-02-2012 at 04:45 PM.

 
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