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 everyone,
Well saw 3 doc's this past week and still no definite diagnosis but I am feeling a little more positive. One was a new rheumy. He said he couldn't explain all my weird symptoms. Although many of them visible things you can see without the labs he couldn't explain it. Next doc was a sports medicine doc. The very first doctor I saw when all this started. He said there was definitely something wrong with me, but he wasn't qualified to make a diagnosis because whatever it is he believes is rare. He wants me to go to Cleveland Clinic. The third doc was the dermatologist partner that diagnosed me and has been treating me. My symptoms have been getting a little worse even on the prednisone and my derm is out of town so I saw his partner. I was kind of curious to see what he had to say anyway. He believes it is either DM or MCTD. He assured me that I was NOT CRAZY!!! I definitely had something autoimmune going on and that I was one of those rare cases that have horrible symptoms, but only a couple slightly elevated labs.
He basically told me to forget all of my past apts. Check those doctors off my list. He said he and my dermatologist have seen enough cases to know it is in this category. They are sending me to another rheumy who is known to be more open about treating people who don't have the labs to back up a diagnosis. Can't get in until April, but he said they will handle my treatment and watch me closely until I see her. He apologized for what I've been going through and told me to try to relax about the situation because I didn't need the added stress. Although this is all still very scary, I do feel better about the situation and that I am at least heading in the right direction.
Thanks for all your support. These last few months have been maddening. I do have a few questions. Aside from some of the hair on my head. I don't mean a ton, just more than usual and this was before prednisone. Has anyone else lost body hair in other places? All the hair on my arms has completely fallen off. Has been that way for months. It does come back on my legs, but not like normal. Also I might have mentioned this before, but the prednisone seemed to be working at first, but my pain in muscles & joints has been horrendous lately. Constant spasms and twitches and it has spread. Very achey calves and knees. Pain in areas of my body, I have not experienced before. Now sores in my nose, hand tremors are so bad sometimes I can hardly use my hands, very embarrassing. Just wondering if any of you have had these symptoms or had the prednisone work initially and then stop??
Well saw 3 doc's this past week and still no definite diagnosis but I am feeling a little more positive. One was a new rheumy. He said he couldn't explain all my weird symptoms. Although many of them visible things you can see without the labs he couldn't explain it. Next doc was a sports medicine doc. The very first doctor I saw when all this started. He said there was definitely something wrong with me, but he wasn't qualified to make a diagnosis because whatever it is he believes is rare. He wants me to go to Cleveland Clinic. The third doc was the dermatologist partner that diagnosed me and has been treating me. My symptoms have been getting a little worse even on the prednisone and my derm is out of town so I saw his partner. I was kind of curious to see what he had to say anyway. He believes it is either DM or MCTD. He assured me that I was NOT CRAZY!!! I definitely had something autoimmune going on and that I was one of those rare cases that have horrible symptoms, but only a couple slightly elevated labs.
He basically told me to forget all of my past apts. Check those doctors off my list. He said he and my dermatologist have seen enough cases to know it is in this category. They are sending me to another rheumy who is known to be more open about treating people who don't have the labs to back up a diagnosis. Can't get in until April, but he said they will handle my treatment and watch me closely until I see her. He apologized for what I've been going through and told me to try to relax about the situation because I didn't need the added stress. Although this is all still very scary, I do feel better about the situation and that I am at least heading in the right direction.
Thanks for all your support. These last few months have been maddening. I do have a few questions. Aside from some of the hair on my head. I don't mean a ton, just more than usual and this was before prednisone. Has anyone else lost body hair in other places? All the hair on my arms has completely fallen off. Has been that way for months. It does come back on my legs, but not like normal. Also I might have mentioned this before, but the prednisone seemed to be working at first, but my pain in muscles & joints has been horrendous lately. Constant spasms and twitches and it has spread. Very achey calves and knees. Pain in areas of my body, I have not experienced before. Now sores in my nose, hand tremors are so bad sometimes I can hardly use my hands, very embarrassing. Just wondering if any of you have had these symptoms or had the prednisone work initially and then stop??
I'm currently on Prednisone 20mgs & Methotrexate 15mgs. I used to have hairy arms for a female, now I've got just a little bit left on them. And my legs, too. To keep the hair on my head, I take Folic Acid everyday. My hair is baby fine and thin, but still pretty full and I don't have any bald patches.
Keep trying to get the affirmative diagnosis. This is crucial, IMHO. I was able (with my doc) to find what meds work best for my Poly when I got the "we're sure it's Poly" from my doc. It took having a muscle biopsy to get that diagnosis. My leg muscle was full of the inflammation. My CPK was 6600.
I'm also affected by the weather. If it's bad outside, I have more pain. Massage helps reduce, but I don't take additional meds. Too much Prednisone can bring on muscle aches, as can Ibphrophen (Advil, etc).
Good Luck
=^.,.^=
PS: Today, my CPK is around 165. I use my walker occasionally, and a wheelchair for going to the zoo, those type of activities. Day to day, I am able to walk without aid around my house, and with a cart at retail stores. Stairs, however, are in my past. And, I need help climbing up or down curbs. I also have a slight balance problem.
BK
Believe me I am still going to keep working on the positive diagnosis. I know this is crucial for a number of things. Hopefully this new rheumatologist will be able to provide those answers. I talked to someone in her office about my situation and she said she thought this doctor would really be able to help me. Let's hope she's right.
The dermatologist I see said most of the people he has treated for DM responded pretty quickly to the high dose of prednisone I am on but he also said everyone is different. My cpk is completely normal now. It was only 231 before and I only have slightly elevated wbc nothing else. I just don't understand why I'm in so much pain. I have had a few doctor's tell me I have fibromyalgia along with whatever else. The pain I have does not really correlate with fibro. Well some of it does, but not all. My muscle pain is pretty much everywhere and constant spasms and twitches. My worst pain is in my neck, shoulders, traps and down my rhomboids. My strength is not what it was, but not horrible. It is still hard for me to lift my arms above my shoulders or reach for things.
I don't really take too many meds. Never was a pill taker, but I have had to come to the point that I take pain meds occasionally. Usually only at night and if I absolutely can't take it. I will try the folic acid. They are weaning me 5mg at a time from the prednisone.
I am so sorry to hear you are having so many troubles. I certainly hope things start getting better for you and I will keep you in my prayers.
Good luck to you as well!!
Mel
Thanks, Mel...Hope your doc is a keeper. Actually, I'm much better now than I was before diagnosis. I also have Fibro, and I take Tramadol 2xday for it. Tried Lyrica, but couldn't take it...made me dizzy.
You might have Fibro. I got diagnosed with it in 2004. Poly came in 2011. How I suspected I might have it, was blood pressure cuffs hurt like the Hulk was crushing my arm, and I was very achy after my job (I was a legal secretary in 2003). Had lots of blood tests, but when Tramadol eased the whole-body pain of Fibro, my doc said that was the best test for it...less all-over aches.
Poly was suspected when I fell off a curb, hit the parking lot pavement, and couldn't get back on my feet.
Hope some of my story helps...Purr. My granddaughter (who did a school report on Poly) is standing here bugging me, so I'll share a bit more later..
Hugs,
=^.,.^=