Anyone ever deal with Myocitis?

[AllegroRondo]

We just found out my wife has it. While its great to finally have a name for whats going on, its been a huge change for us to deal with it.
Basically, its a neuro-muscular condition related to MD, that makes her muscles very weak. It started with her getting very tired all the time, then having difficulty walking, then difficulty breathing. She's only 43, so these things were very worrying.
Now, the docs have her on dozens of meds that we hope will stop this from progressing. Shes using a walker to get around, and needs a machine to help her breathe when she sleeps (the same kind you would use for apnea).

If anyone has dealt with this disease, id love to hear from you, or any tips on how to cope with it.

[Warpy]

1. It's polymyositis and it's a relative of the other

autoimmune diseases like lupus. A good overview is at http://www.mayoclinic.com/health/polymyositis/DS00334

The support group, which can give you newsletters with information on new treatments and clinical trials, is based in the UK, http://www.myositis.org.uk/

The bad news is that it is incurable. The good news is that it is treatable.

[AllegroRondo]

2. thank you

I hadnt seen that support group yet. I did find one on Yahoo that has some information.

My wife actually has the Dermatomyositis version.

[unapatriciated]

3. My son was diagnosed with dermatomyositis in 1991....

which also involves the skin. Stretching and physical therapy (even when you are too tired) is very important. Your wife is going to need a lot of love, support and understanding. Seek out a teaching hospital in your area, they are usually more up to date on newer treatments.