Re: Mon.

[Guest guest]

julie steinmuller wrote:

Jax-

I sure hope you get somewhere with finding a good doctor- seems

to be a common theme for many of us. Those knots you have are

puzzling--- I imagine they could be due to scar tissue or myositis

related--- not having the firm DX's, so hard to figure out. But if

they are all just under the skin---- hmmm..... do any of them come

and go and did they appear gradually or all of a sudden?

Hi ,....thanks, I am working on a couple

things to try and find a referred Dr. who is knowledgable about the Myositis's.

Everyone I've contacted so far their receptionist act surprised when I

ask them if the Dr. has experience with Myo. patients, or knows very much

about it. It's like they say: Duh, he/she's a Rheumatologist so he/she

would know about ALL conditions related to their field.

Maybe I'm asking the wrong questions. After all these years I am

so Dr. burned out, I'm not sure what to say any more.

As far as the lumps, they aren't really knots,

like what you'd have from a charley horse, but more like a raised elongated

hard lump under the skin attached to the muscle. I can run my hand over

them and they feel bumpy. Not like cellulite rippley, but definate little

lumps up and down my thighs, a few along the outer sides of my legs. Up

and down my forearms, one large one in the middle of my biceps. A

couple middle size one under my arm close to my ribs, and a few on the

back of my neck. One middlesize one under my wing area in my back.

Oh yeah and one on my pelvic bone. Probably more that I can't find because

of the padding on the rest of my body,...LOL,....

Could be scar tissue I guess. They all are there

all the time, and some stay tender all the time, and some flare up for

reasons I haven't figured out yet.

The ones in my arms developed 15 years ago, and the ones in my legs

started about 10 years ago. So whatever it is, it spread.

Thankyou for asking, hope you are doing well.....

Smiles, Jax