Sorry, need to vent, hope that's ok,
Last 2 times I seen the Neurologist who said my Adolase and EMG was abnormal, said he was pretty sure I had Polymyositis. Seen him today and asked about genetic testing and mitochondria testing another Neurologist in Denver suggested. He explains the genetic is expensive and if you do have something it upsets the family cause every little thing they get, they think they have it, whatever “it” is and it would cause everyone to not be able to get insurance. He doesn’t want to do the mitochondrial test cause he doesn’t think it’s MD. He says I do have a muscle disease, a myopotrohy/myositis (not sure how to spell). He explains more than once that some illnesses we don’t know what they are.We didn’t used to know what MS, and Alzheimers was but now we have a name. I talked about my blood test, apparently the cpk, sed rate, ALT, AST ANA were normal. I asked him about Imuran, Methotrexate, Treyall, Rheumatrex, IVIG , things I read for myositis’s and heard on here. He says the IVIG is about $6,000 a month and insurance probably wouldn’t pay without a definante diagnosis. And since I don’t have a definant diagnosis, it doesn’t warrant him trying the other things mentioned above. I can’t do stairs, my legs, thighs, shoulders, arms , butt are always weak and in pain. Through the years I’ve had bad fatigue, canker sores, rashes, sensitivity to the sun, get a bumpy red rash, sore painful roof of my mouth, cold sores, Charlie horses in my legs and feet, large blisters in my palms of my hands, red inflamed painful ends of my toes. Etc. Now I don’t have a name for what I have except, muscle disease as he called it. Guess I need to try the Rheumatologist again or go out of town.
I'm so sorry you're going through all of this. Sounds like you know what you have to do. See a Rheumatologist or see someone out of town. You're really not getting the care you deserve.
I have DM. When I was diagnosed I had all of those symptoms except the blisters. You need the diagnosis asap. The CPK doesn't always determine how sick you are. I have a friend I met online with Dermatomyositis, her CPK was always perfect yet she's in constant pain and weakness…at the same time I could be having a great month and my CPK was up to 4,500.
I really hope you find someone. Let me know if you need help finding a good Rheumy, I'll do what I can on my end!
I had went to the Rheumatologist she thought Pseudomyotrophy, a type of MD, she sent me to the neurologist who did the EMG and blood test. Which were abnormal. Sent me to someone else who did the biopsy which came back normal. The Rheum. was upset about where the biopsy was taken from me and where it was sent. Sent me to the Neurologist in Denver who only said he didn't think it was Polymyositis cause I've had it too long, although I've read where you can have it as a kid or from 20's to like 50's. Then my Neurologist here said twice he thinks it is Polymyositis so that's what I was going on. The stair thing and body parts and arms fit. Now I don't know. He restated that I DO have a muscle disease. We only have one Rheumatologist here, guess I'll try her again. He gave me a presc. for pain to try for 15 days, but I cant' read what it is, will get it filled tomorrow. How long have you had DM?
Well when they figure it out, don't let them talk you out of a medication that you decide you may want to try. My insurance said no to IVIG at first but after re-submitting and waiting about 3-4 weeks they approved it. It was sort of ironic actually, the nurse and I fought tooth and nail for my insurance to approve it and I ended up having a bad reaction, was in the hospital with meningitis! Oh well.
I've had DM for about 2 and a half years now. Sounds like your Rheum was right to be upset, that biopsy had to have been a false negative. If you have a muscle disease, which with those symptoms it's pretty evident, it should show up. Mine was done in my bicep. I'm told some people get it done in their thigh.
Big surprise, you can't read the doc's script ;-)
Thanks, going to call her tomorrow and see what she says. I would feel better if I had a name for the problems I've had for years. Going to go find something to eat, you have a good evening.
Here are some possibilities for you as far as a Rheum in the Denver area that specializes in PM. I would still ask if they are specialists, or make the appt with the one most familiar with this.
I understand how frustrating it is to get the dx and care that you need and deserve. It took me 7 years, and they still suspect SLE or MS along with my other list of ills!
I was on Enbrel for about 2 years, and out of pocket this med is $1,500.- $1,800. for one shot for one week. I was fortunate beyond words that this was covererd 100%, however, I've reached the point that I can no longer maintain my immunity to every bug my grand kids can carry in! UTIs are getting to be the 'crisis d' jour', along with bronchitis, of course Sjogren's attacks the lungs, but both PsA and Sjogren's are systemic A1 diseases.
My Rheum is an Asst Professor at UWV, so he not only practices, but teaches. My GP is excellent, when I was making the 'please fix me' rounds to Hopkins and U of MD, he always hooked me up with the Asst Prof. They are the ones who literally 'write the books'.
I'm the new kid here, though I do not suffer your disease/or suspected disease, I have many of the same challenges and aches and pains. I hope that I can be of help to you and your wonderful moderators here!
Wishing you well,
Thanks, it's just frustrating that I thought I had a name and now I don't, just "muscle disease". So not getting the treatments that other ones with Polymyositis get that could help. I'm new too. Trying to learn what I can. You sure have a lot. I was always told fibromyalgia, and that's when you only heard that fibromyalgia was in the head, and since I've always had depression, I've been told it's that, cause depression causes pain. But it's more than pain, there's weakness. No strength. Can't do stairs, can't have my arms up, can't hardly stand up out of the chair at night or out of bed.etc. Sorry, I hate whinning, just so frustrated, i've had this for 20+ years. The only good thing is the doctor says the blood test shows there's wasting, so it's not in my head.
You know many of these diseases get labeled that way, that 'in the head' garbage! You have every right to feel the way you do! Fibro still carries this stigma!
My Rheum told me that yes, I do have fibro, most likely caused by the chronic pain of the autoimmune diseases, but the fibro was the very least of my problems.
The Neurologist I went to, after many expensive visits and tests, told me his dx of my condition was "STIFF", Charlotte, I was so infuriated that my husband grabbed me and shuffled me out of there, before I unloaded on him. My GP and even DC were dumbfounded! My current Rheum said all they had to do was look at your fingernails! It tells the whole story!
So now you have to either light a fire under him or get to someone who can make a better determination!
I'll help in any away I can, I'm pretty good at digging through the net.
Fibro is so much like autoimmune, and so many autoimmune diseases are so much alike, and with the systemic ones, they go for every cell of the body! From what I have read of neurological disorders, they also seem to be so very similar!
It really isn't whining, it's not giving up!
It's so sad when it's a positive thing that a blood test comes up positive, but I get that. When I went through all of the testing I prayed that it came up with something, so they wouldn't just send me home and say, sorry, no idea.
You're definitely not whining. I just can't help but go back to the not being able to do stairs, and extreme weakness in the extremities, along with pain?? That sounds like classic PM. But I don't get paid the big bucks!
Get some rest and "whine" whenever you want!!
Thanks, I'm cooled off now, lol, thanks SK for the link, I'll look it up, I'll give the Rheum here another shot if no help I'll travel. Meanwhile i'll fill the prescription he gave me and see if it gives any relief. You's have a good night, and I hope with no pain sleeping.
Nah, it's the chronic pain, and loss of function, causing the depression! Not getting a dx or treatment for 2 decades can make Mary Poppins severely depressed!
And people saying "your too young to have all these problems" or "I'm tired too, but I have to work and take care of my kids" or I raised 5 kids you only have 2 and you have all these problems, on and on, makes you feel awful
Oh yes, the 'I'm tired too', or "I don't feel good either"! No wonder we become isolated, and depressed, and sometimes angry, it all fits, you know?!
And lets not forget the 'but you don't look sick'!
Hopefully a qualified Physician is in your near future, and solutions are on the way!
Wishing you well, sending a hug,
Oh yeahhhhh, that's a big one, I tend to wear makeup, but today I didn't so he could see my red face. but didn't make a difference. I am working 4 days a week, but going to go to 3 and try that cause of the pain and no sleep cause of pain, and I recently told a few people at work so they know why and I came into work the other day dragging and one asked me what was the matter, I said tired, she said why, I said cause of the pain and she says, " See you shouldn't of read anything on it, now you have the symptoms". oh, I was mad,
Best to just talk to us, you know? It's a shame, but true!