Inclusion Body Myositis

[Guest guest]

Hi:

My muscles biopsy just came back negative. My doctors saids this

means I do not have polymositis and probably have IBM. Has anyone

here been diagnosed with that disease. Seems worse than polymositis

as there is no treatment. Or is there? Gosh, this is becoming more

scary by the moment.

Janet

[Guest guest]

Hi Janet...there are two people on the list with IBM. Here's a site if

you want to read up on it.

<a href= " http://healthlink.mcw.edu/article/921770542.html " >click

here</a>

I didn't know this at the time that my muscle biopsy was sent in but the

first lab came back as inconclusive. They had to send it out to UC

and UCLA for evaluation. Then it came back as PM. If I didn't have all

the other signs I'm sure the clinic wouldn't have gone into further.

But, all the signs were there. It's not uncommon for a muscle biopsy to

come back neg. One more reason why this disease is hard to diagnose.

I'll see if I can find more info for you on the muscle biopsy.

Take care,

Vicki

[Guest guest]

Hi Janet.

Don't jump to conclusions just yet. I understand that not all

biopsies are positive, even when it later turns out that someone has

PM. What can happen is that the surgeon, just by chance, happened to

get healthy tissue in the biopsy sample. A few of the people on this

board required several biopsies before being diagnosed.

IBM is a little different from PM. Jim Kilpatrick often pops in here,

and he has IBM. I think I might listen to him for advice on that form

of myositis. What he does say is that prednisone only rarely has any

effect in IBM.

One of the hardest parts of any of these diseases is the uncertainty

before you get a conclusive diagnosis. Hang in there, and realize

that you are now much closer to knowing what is really causing you to

feel bad.

Please keep us up to date on what's going on with you. If any of us

can help, be sure we will.

Oh, and keep warm.

Mike B