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Old 03-04-2005, 03:07 PM   #1
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Rorie HB User
lots of questions about myositis...

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!

 
Old 03-07-2005, 11:10 AM   #2
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frogy HB User
Re: lots of questions about myositis...

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.

 
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Old 03-08-2005, 04:12 PM   #3
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Lenin HB UserLenin HB UserLenin HB UserLenin HB UserLenin HB UserLenin HB User
Re: lots of questions about myositis...

You might find more also on the fibromyalgia thread.

 
Old 04-14-2005, 12:57 PM   #4
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bsktballin33 HB User
Re: lots of questions about myositis...

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.

 
Old 04-20-2005, 06:31 AM   #5
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whatamuse HB User
Re: lots of questions about myositis...

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

Last edited by whatamuse; 04-21-2005 at 06:56 AM.

 
Old 05-14-2005, 04:12 AM   #6
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anzavic HB User
Re: lots of questions about myositis...

Hi Rorie,

I have PM (Polymyositis) so I'm going to try and answer your questions.

1. Myositis are considered inflammatory myopathies. Inflammatory myopathies are diseases of the muscle where there is swelling and loss of muscle. There are four types of Myositis: Polymyositis, Dermatomyositis, IBM and JDM.

Inflammatory myopathies are thought to be autoimmune diseases. All of these diseases can cause muscle weakness, but each type is different.

2. Some early signs of myositis include:

Trouble rising from a chair, climbing stairs, or lifting the arms;
Tired feeling after standing or walking;
Trouble swallowing or breathingMyositis is a rare disease that affects the muscles closest to the trunk. Inflammation

3. Normally, protein is not found in urine when a routine dipstick test is performed. This is because the kidney is supposed to keep large molecules, such as protein, in the blood and only filter out smaller impurities. Even if small amounts of protein do get through, they are normally re-absorbed by the body and used as a source of energy.

4. Complete rheumatic panel done on me, CPK test and then a muscle biopsy.

5. Stress can bring it out...or any other disease. Having a baby is stressful and your immune system is at a low.

I would see a qualified Rheumatologist in your area and have him/her run the rheumatic panel on you along with an antibody panel. The antibody test will let you know if you have anything else running with myositis if that's what you have.

I carry the JO-1 antibody and it's specific for myositis only. It's also a marker for lung disease.

Vicki

Quote:
Originally Posted by Rorie
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!

 
Old 05-26-2005, 08:07 AM   #7
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Join Date: May 2005
Posts: 404
janeslk HB User
Re: lots of questions about myositis...

I posted this on the high cholesterol board from an article by a rheumatologist on myositis. In his recent cases he is seeing an increasing number of muscle problems caused by statin use, especially the use of two cholesterol-lowering drugs at one time.

He says: "There are many other medications(aside from statins) and diseases that can cause muscle aching. Of all causes, however, statin drugs are what I see as the most common culprits. If you or someone you know has muscle pains, check the medications being taken first!"

This may not be the cause in your case, but it seems to be some sound advice. A lot of people seem to be undergoing all sorts of expensive tests when the problem may be in their medicine cabinet.

 
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