Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi again my friends. My family doctor called me in today to go over some of my results as the rheumy had not called me. Apparently the muscle biopsy did not show myositis, and the mri's of the two muscles groups were good. She did not have a copy of my latest bloods yet.
My family doctor is not too aware of this disease, but she is very concerned for me. She said that she wil call the rheumy today and see what his take is on these results and also get my bloods from him.
The 60 mgs of pred are taking their toll with the side effects, insomnia, messing with my head, etc., but that i will deal with. The body feels a lot better than it did 21 days ago. Still problem with walking. The left gluts have not freed up completely, but at least i can move around more now. I am starting to stretch out the muscles with resistance bands, albeit very gently.
I have a ct scan tomorrow to look for cancer, but do not see the rheumy again until may 2nd.
I am feeling very confused now. Do I have myositis if it does not show up in the biopsy results? Is the biopsy the final say in the diagnosis? I know there is a lot of knowledge and experience here with all of this and perhaps someone can tell me what this means.
Here I sit just waiting to hear from my doctor. Hopefully she can get some info from the rheumy. Sonia
My family doctor is not too aware of this disease, but she is very concerned for me. She said that she wil call the rheumy today and see what his take is on these results and also get my bloods from him.
The 60 mgs of pred are taking their toll with the side effects, insomnia, messing with my head, etc., but that i will deal with. The body feels a lot better than it did 21 days ago. Still problem with walking. The left gluts have not freed up completely, but at least i can move around more now. I am starting to stretch out the muscles with resistance bands, albeit very gently.
I have a ct scan tomorrow to look for cancer, but do not see the rheumy again until may 2nd.
I am feeling very confused now. Do I have myositis if it does not show up in the biopsy results? Is the biopsy the final say in the diagnosis? I know there is a lot of knowledge and experience here with all of this and perhaps someone can tell me what this means.
Here I sit just waiting to hear from my doctor. Hopefully she can get some info from the rheumy. Sonia
I'm so new to this, so I don't know how much help I can offer.
I was diagnosed through having an Mi-2 antibody (very specific for dermatomyositis), so my rheumy doesn't feel I NEED the muscle biopsy to confirm this diagnosis.
Also, I've read here that if they don't grab the right piece of muscle at just the right time, it can be negative and maybe even confuse the situation. Additionally, if you're having the muscle biopsy, there are many strong suggestions that you have the RIGHT person do it (someone very familiar with this disease) and the RIGHT pathologist read it (one who is used to seeing this disease under his/her microscope).
That's just my 2 cents, for what it's worth ... but I'm sure someone much more wise than me will wander along and help you out too with some advice.
Hang in there!
I'm chiming in to say that I'm right there with you. My recent muscle biopsy also came back negative, and I'm not feeling any better.
I've spent the last year doctoring about these symptoms, but for the first 6-9 mos I saw mostly neuros. The rheum who ordered my biopsy says he doesn't know what else to do, so just yesterday he wrote a referral to our local U, a teaching hosp.
Sometimes we have to focus on what we CAN do...rest, continue to seek helpful medical partners, and take care if ourselves.
With love,
Tricia
Autumm you say that if the pred works it is a direct pointer to the diagnosis. After only 22 days the worst of the pain has gone, but i still have trouble walking and my middle torso is like that of a rag doll. I cannot even sit and eat at the table without propping myselft up with my arms. How long before one can say the words, "the pred works" . In my naivete i thought the pred was "instant cure". Now I am beginning to realize it takes time, but how much time before you can judge whether it works.... (Now, now sonia, where's that patience)....
The pharmacist told me to get a medic alert bracelet stating steroid dependent. I noticed in trypts post that she had been told the same. Is this something that is recommended here....
Tricia, i am so glad to hear you being referred to a teaching hospital. It is so frustrating not to have a diagnosis. Please do keep us posted.
I count my many blessings, especially for my very supportive and loving family. They are behind me every step of the way. I thank this wonderful group for being here to offer advice and support. I am so very fortunate. Love and peace to all. Sonia