Polymyositis

[LizPetillo]

Gee .. another new word I never heard of ...
First it was Sjogrens .. now it's Polymyositis.

Went to the Rheumy today.  Tests came back.
He wrote "polymyositis' on my paperwork.

Been looking up info on it.
Looks like it could explain my difficulty swallowing for the past 4 years.

(or that could be something else entirely .. god only knows now adays)

Anyways .. anyone else have 'polymyositis' ??

Tell me what's going on with it ...
tell me what you are doing about (if anything).

From what I have read today, it looks like it's one of those things that can go with Sjogrens, Lupus, etc ...

[gold55]

so sorry Liz....I know it's an inflammation of muscles, another autoimmune thing but currently I don't know anyone who has it.  My Mom couldn't swallow but she was diagnosed with Myasthenia Gravis.  As much as I like this forum, it makes me sad when I hear others coming up with new disease processes.  It's very educational but at the same time it's scarey.  I guess all of us AI people are open to so many diagnoses over a lifetime.   Has your doctor mentioned any medication to assist with the muscle inflammation?  Although they tell me I have joint issues a lot of the aches and pains I currently have seem to be more muscle/tendon inflammation than joint.  Guess SS affects all of it!  Hope you can get some relief.  jill

[anita]

Sorry Liz to hear about yet another diagnosis.  You mentioned tests came back, which tests?  I often wonder if something like this causes my swallowing problems, so I'd be curious how he came to this conclusion.

[Joe S.]

A few years ago, a lot of people with Fibromyalgia were converted to this Dx. I think this is the one for ssdi. If it is, consider it a kindness.

[irish]

This does not surprise me cause many of the muscle weakness, swallowing issues can be attributed to the polymyositis. The treatment is pretty much the same as the other autoimmune.

I believe that the stronger meds are needed and I would ask about this. When swallowing is compromised it pays to be aggressive in treatment. This can also affect the muscles in the intestines, etc so the slow GI tract can come into play.

Another one of the AI diseases. They all have their issues and I guess we lucky ones are the chosen ones to deal with this stuff. Just do some searches and you will find more info.

If you have skin issues it becomes dermatomyositis as the muscles plus the skin are involved. It has to be skin issues that are pretty much diagnosed by a dermatologist I would think.

If you are interested in skin pictures do a search with dermatomyositis images and you should get some pictures of the skin problems that are kind of distinctive for this disease. Otherwise keep in mind that sjogrens can have skin issues also. Irish

[BonusMom]

I was diagnosed with it last Winter. Just before I was diagnosed with SLE and SjS, I learned that my half-brother, who is several years younger than me, has Dermatomyositis.

[bsnook]

This is one of the issues which is listed in Mixed Connective Tissue Disorder.  I have Fibro, SJS and polymyositis(sp)  I've never been able to spell it!!!!  I was Dx with this in April, after SJS in Feb,

[LizPetillo]

You mentioned tests came back, which tests?  I often wonder if something like this causes my swallowing problems, so I'd be curious how he came to this conclusion.

Symptoms and bloodwork.  There is also a test they can do that takes a sample of muscle but my DR isn't a big 'cutter' so we aren't going there ...

I have had a swallowing problem and pain for 4 or 5 years.  On the right side.  Feels 'full' and hurts and has difficulty swallowing on that side.

I've had scans and xrays and other scans and ultrasounds and they could never find anything.  But my OTHER tests .. the sjogrens tests ... bloodwork and all ... came up with the muscle problem and that would explain why my throat/neck has been doing what it's been doing for 5 years.   It would also explain why the only time it stops hurting and starts working correctly is when I get a dose of prednesone ... usually given for OTHER things like broncitis or whatever ... the nice 'side effect' was my throat/neck felt better and worked.

Looking up info .... says steroids and/or IVIG for treatment ... ugh.

[hollowoakfarm]

Ask for a muscle biopsy to be sure you don't have Inclusion Body Myositis.  IBM is often misdiagnosed as polymyositis.

[irish]

Liz, I had a muscle biopsy done and it was negative. It sounds like it is no big deal, but it is a big deal. Up in the metropolitan area where I doctor the University had only one doctor that did it and he was gone and they referred me to another doc on the other side of the city who did a lot of them.

They are very tricky to do and I would guess that because the muscles tend to want to contract and can get little tremorsor spasms the meds given are also important. Need the right conditions to get down into the big muscles and get good specimens. They did my biopsy on my upper left thigh under anesthesia. Left a little scar about 4 inches that has shrunk some and very hard to see. Please get it done so you know for sure what you are dealing with. Irish