lots of questions about myositis... - Myositis Message Board

Rorie · 03-04-2005, 04:07 PM

Hello! I've been wondering for two and a half years what is wrong with me, and today my doctor finally said he thinks I may have myositis. I don't know what that is, really. Can you explain:

1) basically what is it? and

2) what your major symptoms are? I mainly have pain/tenderness all over on the right side and I have just started having muscle spasms on the left side.

3) I also have protein in the urine...could that be connected too?

4) Also, how were you diagnosed?

5) My problems started immediately after having a baby. Does that affect it?

My doctor is doing some blood tests and is doing an x-ray because I have a bump on my knee he thinks might be from excessive calcium. Is that a symptom? Then he said he may send me to a neurologist.

I am very interested in this disorder. Anyone want to share their information? Thanks!

frogy · 03-07-2005, 12:10 PM

Rorie,
This is not a very active site for Myositis. But if you look at the post entitled Dermatomyositis below, there is listed several very good web sites with information and support groups.

My husband has it, and yes all of those things can be caused by it. Usually you are diognost by a muscle biopsy.

Good luck, and check out those web sites.

Lenin · 03-08-2005, 05:12 PM

You might find more also on the fibromyalgia thread.

bsktballin33 · 04-14-2005, 01:57 PM

A few years ago I got kneed in the quad during a basketball game. They first said that I had a severe muscle contusion, but after months and months of not healing they decided it must be something else. I had a huge hard lump in my quad and it was very painful. My ROM sucked, I had a few MRIs and they showed some unknown masses so they did a muscle biopsy. They found out that I had 3 spots of calcification growing in my muscle and called it myositis ossificans. I don't know if this is the same thing that you are talking about or not, but I've done some research and usually they develop after some traumatic injury.

whatamuse · 04-20-2005, 07:31 AM

My father had this. He was misdiagnosed for 20 years before a muscle biopsy confirmed it. I know he needed new knees, an ankle joint and had many problems with his shoulder, and surgeries. It is unclear if myositis was to blame for all.

He was quite debilitated.

There is a book i bought him that he swore by you may wish to start there:

There's one simply called 'myositis' but there are a few others that are affordable too. Check online auctions

Best