Newly diagnosed & confused - Myositis Message Board

AngelaA · 12-14-2003, 10:40 AM

Hi,

I'm 34 yr old and recently started having migraines. After a neuro ran blood tests it was discovered I had postive ANA antibodies. I was referred to the rheumatologist, and I might add the only rheumy for hundreds of miles. He diagnosed me with Raynauds, Myositis and Myalgia. His only advise was to read as much about the diseases as possible, keep my hands & feet warm and only come back to him if I got worse or got a butterfly rash. He said there was no treatment either prescription drugs or nutritional supplements to help. He said there is "nothing I can do to treat you, so don't come back". He really did not explain the myositis to me. From reading on my own I can only assume the Myositis is related to the continued swelling of the muscle of my lower leg that has occured ever since I broke the leg over 18 months ago. The swelling occurs where my leg struck the rock, though the actual break occured in a different location. The bone healed up fine according to x-rays, however no one had been able to explain why I have a two inch high knot that persists. I get stabbing, aching pains in the area. It comes and goes and worsens anytime I do any physical activity. I also have similar unexplained pains in my shoulder.

On a website I found a picture of a rash in neck/chest area of a myositis patient and was shocked because I had that same rash this past summer. Where can I get info on this disease or whatever it is? I didn't find much info online other than it is a "form of muscle inflammation". Is there really no treatment for it?

ToniT · 12-17-2003, 05:19 PM

Hi, Im 27 and was diagnosed with Dermatamyositis a few years back. That's what it's called when you have skin involvment. I also have Raynauds and Lupus. Your Dr is mistaken. They treat myositis with steroids when it is bad. I receive IvIg infusions twice a month for my disease. If I didn't get these infusions I don't believe I would be able to walk. The disease makes you very week. The rash you are talking about is common for Dermatamyositis. If I were you I would look into seeing another Dr. There are treatments for this disease.

Good Luck,

Toni

AngelaA · 12-20-2003, 03:34 PM

Toni,

Can you tell me more about this IvIg Infusion thing? What exactly is it and who is giving it to you... a rheumy or a naturopath? I saw the dr that is treating my thyroid yesterday and updated her on my diagnosis with myositis and Raynauds. I told her how the rheumy had said there was nothing he could do for me. She said if I can find put from you what this IvIg thing is all about she will look into it and hopefully find a dr that can help me.

Thanks for your help!

Angela

Tricia/DM · 12-20-2003, 10:49 PM

Angela,
I also credit IVIG for my great improvement. This time last year I was wheelchair bound. I received monthly IVIGs for three consecutive months, (Jan.-March 03). I now get around using only a cane. I also take several other meds including Prednisone & Methotrexate.
There is treatment for Myositis. The following are a few links to wesites with more info.

[url]http://www.myositis.org/[/url]

[url]http://www.mdausa.org/disease/pmdm-d.html[/url]

[url]http://www.myositissupportgroup.org/[/url]

I hope this helps you.
Tricia/DM

AngelaA · 12-21-2003, 09:06 AM

Tricia,

I looked on those websites and only saw one reference to IVIG. My dr still needs to know exactly what it is and what kind of dr uses this therapy?