Finally got my muscle biopsy results today

[Tinker]

I'm positive for polymyositis but it's mild.  She checked my strength in my arms and legs and thought I was faking it.  !!!!!!!!!!!!!!!!  I wasn't. 

Anyhow, since polymyositis and cancer go hand in hand, I  now have to go to my oncologist and get screened for cancer.  If I'm negative, then she wants to start me on 10 mg of Prednisone every other day.  It's a low dose cause I don't do well on steroids.  She said I had to try the steroids at least before insurance will pay for IVIG. 

She also said I cannot take any cancer drug because of my previous history of breast cancer and cancer drugs.

She said I have 3 reasons to qualify for meds (I guess she meant IVIG??) :  Sjogren's, Hashimoto's, and this possible paraneoplastic disorder associated with the polymyositis.

I met a young woman in the waiting room with the same sx as me.  She also has polymyositis.  There is a local support group in my area and the poster was on the bulletin board.  At least I found a local place to go for more support and info.

Guess this diagnosis hasn't really hit me yet.  I'm kinda numb.  Thanks, everyone.  Tinker

[Tinker]

Why does this not show as "new?"  Does it show as new on your page?  Maybe I didn't do this right?

[irish]

Tinker, Well, now you know!!! I think that it sounds like she is checking the things that need to be checked.

Also, there are many people that have mild polymyositis. I have taken care of patients with this disease many years ago while in training. People can do well for years with treatment.

The IVIG is usually given for the polymyositis I think. I get a book about IVIG patients and it lists the diseases that are treated. Sjogrens is not usually treated unless the neurological issues are severe. Hashimotos is not listed in my information but I would think that the symptoms of the disease are what warrant the IVIG.

So many of these neuromuscular diseases respond to the IVIG. I think you will find that you will feel better. Probably you will feel better on the predisone also. You may find that another opinion on cancer drugs is in order if you ever get any kind of cancer again. I guess I would advise you to just play it cool as anyone who has an autoimmune disease is at a higher risk of cancer. It just is the nature of the beast. The cells don't know what they are to attack and sometimes we end up with a cancer.

Thankfully there is a lot of new information and meds out there. I am really glad to hear that you have a support group. That is so cool. Now you can go out for coffee with new friends. Good luck and keep us posted. Irish

[Linda196]

Tinker, the reason your post didn't show up as "new" is because when you posted it, your screen went back to the page it was listed on, that shows your computer that the post was read...no longer new. It was flagged as new for the rest of us.

The is a bit of confusion about the increased risk of cancer with myositis, and paraneoplastic syndrome....the syndrome makes the myositis a secondary condition to any pre-existing cancer, but the cancer has to be active enough to trigger a T-cell response that carries on as an apparent autoimmune disease. The increased risk of cancer with myositis (dermato has a higher incidence than poly) is when the presence of the AI triggers malignant growth...it's a chicken and egg thing.

Unfortunately since you have a history of cancer, either scenario is possible, if you can trace symptoms of the myositis back to a point in time before you were given the "all clear" for your cancer.

If it helps any, the incidence of cancer in people with dermatomyositis is sufficiently low that there weren't enough recorded cases in nation wide for a Boston study, and they had to recruit a database from overseas to complete the study http://www.medscape.com/medline/abstract/11197446?src=emed_ckb_ref_0

I'm glad you were able to find a local support group.

[Victoria05202000]

Tinker,

I have been wondering what your results were.  I was hoping it was negative, but it seems you are on the ball with this!  I will continue to say prayers for you!

Vicky

[Scottietottie]

Hi Tinker

I'm sorry you got the dx you didn't want but I guess when you know what something is - you can deal with it. Having a local support group should be a big help. I know I found a local thyroid support group really helpful a few years back.

I hope they find a treatment plan that's tolerable and that works for you.

I remember that 'numb' feeling after the SjS dx. It'll take a while to come to terms with it but you've come to terms with a lot so I know you'll make!

hang in there.

Take care - Scottie 

[Tinker]

Thanks for your support, everyone!  I'm exhausted as I didn't sleep last night.  Caught a little cold.

My nurse practioner called today.  Big surprise as it usually takes a while to get a return call.  Anyway, she said she doesn't know where to send me.  She is checking with other physicians to know where to start.  I asked about a PET scan...don't know much about this.

I would like a bone scan and a vaginal u/s and CA 125 and any other markers they want to test.

I think what my neuro meant about not using cancer drugs on me is because she doesn't want to use them now in case I have a recurrence and need them again.  There is a toxicity level that can't be exceeded.

                 Thanks all of you for your support.  Can't wait to start taking steroids.  YUCK!       xoxoSheila

[Pooh]

Good luck Sheila with whatever course you are given.  I know steroids are the pits, but they really do the job. 

Take care,

Pooh