There are obvious signs for Poly or Derma. Everyone has extremely high CK, that is the muscle emzyme in the blood.
Also if you have had EMG which is a test using needles and electrodes. the needle is inserted into the leg, and the results are instant, they show up on a computer screen. This will tell the Doctor if the muscle are dying in your body.
Lets us know.
Last edited by kiwi girl; 10-05-2006 at 10:19 PM.
Reason: spelling mistakes
Hello, I am Dharlee and am new to the board. I also am being tested to see if I have Polymyositis. I have done a lot of research on this and I must say the symptoms match, but I did not realize that the pain was because the muscles are dying. Is that what I am interpreting from this post?
Hi, all i know is what Spec told me with my childs illness, when she had EMG is showed straight away that there was death of her muscles, some kids have ended up in wheelchair as their muscles no longer work.
Hope this helps
I was diagnosed with polymyositis back on July 10 2006. My symptoms started slowly. Very weak muscles, I noticed I was no longer able to pick up my toddler, climbing stairs, getting in and out of a chair, bathing myself, reaching in my kitchen cubbard was different. I even noticed I ate and talked slower. Placing my hands on my hips and putting my purse on my shoulder felt strange at first too.
I have not been diagnosed yet. I have extreme muscle weaknees/soreness that started in November in my left shoulder. By two weeks it was in the right shoulder. Soon it was in my hips and thighs. And now it is also in my right hand and showing signs of starting in my left hand. I am a hairdresser and I can no longer use a curling iron or spray pump bottle. I can still use scissors and and though it really hurts, I can shampoo, color, and even wrap a perm, but with increasing difficulty. Stairs are getting harder to manage too.
I had the preliminary blood work that showed slightly elevated levels on everything he had me tested for, but they did not test for the CKP. I am now being referred to a Rheumy and quite frankly I can't wait because it is so frustrating to hurt so much all the time and not know why.
Thank you guys for talking about this on the boards. It helps just to know that there are people out there who actually understand what is happening.
Kisha3018, I could not help but notice you are from the smae area as me. I wondered if you would share the name of your rheumy with me? I hope to get an appointment scheduled this week.
I see Dr. Robert Johnson at Crystal Springs with Carilion. My family doctor told me back in late May that there were only 3 doctors in the area that specialized in my needs and they all worked in the same office. My family dr. saw me in his office for 3 months he couldnt figure out what was wrong then he told me I needed to see Dr. Johnson. He said I was on a waiting list and it would take a while. During that time I got worse, I could no longer get out of a chair, going up stairs in my home took me about 10 minutes. I got so scared one night I went into Community Hospital's ER the doctor actually sent me home without touching me saying that there was nothing he could do for me and I had to wait and see the specialist that was on June 21. Dr. Johnson got a cancellation and I took it, he put me in the hospital as soon as he saw me. That was back on July 10, they did 2 MRI's and a very painful EMG. My numbers were 16000 at first, now they are down to 679. I would love to keep in touch with you. Take Care!!!!!
After a routine visit to my doctor with complaints of fatigue and minor joint pain, esp in the fingers, he tested me for RA and thyroid porblems. When the bloodwork came back, all that was normal, but I had elevated ALT and AST (twice normal) and a CPK of 5000. He immediately referred me to a Rheumatologist who retested and had me do an MRI. The tests came back CPK 900, elevted aldolase and c-reactive protein and MRI suggested inflammation. Am getting a muscle biopsy next week to test for PM. My question is this: does anyone out there who has PM not have the severe muscle weakness and pain that I have read as being one of the major symptoms? My muscles are tired and get stiff if I sit too long, and mildly weak when I climb stairs or walk a lot, but I have been attributing that to old, fat and out of shape syndrome.
I have Polymyositis. My symptoms started about a year ago. Im 29 years old. My body felt as though I had been working out and I would wake up feeling sore and stiff. Even after sitting for a few minutes, it would be hard to get up. Ask yourself if the every day things are different for instance, walking, bathing, climbing stairs, if these things are "off" I'd look into it.
I would look into too asap. Early diagnosis and early treatment are paramount in treating this disease. Many people started this way, and wish they had caught it sooner. It goes much easier on you if you do, so I understand.
I was wondering what meds you are on and if they are helping. I'm on predinisone and doesn't seem to be helping. I did the IVIG, the first treatment looked promising but the second i was off the pred and ended up with chemical menengitis, I am going to Cleveland to see another doctor in a week. Trying to get info on what is helping others.
My name is Anna. I am 67 yrs old. When I was 32 or maybe a bit younger, I started having a lot of pain in my left shoulder. Living in a big city at the time I went to the ER to see what was going on. I was dx with possible early arthritic condition. As time went on I got worse. It went to my right shoulder down my arms. I remember having terrible pain in my arms when I awoke and could not move them as the pain was so intense. After I moved them during the morning the pain lessen. This went on for a while till we moved back to our home state and went to a doctor who did all sorts of test. Never told me what it was but put me on pred. As i'm not a very good pill popper and was not very steady in taking the pill. He wanted to take a muscle biopsy when I was due to have gall bladder surgery. He forgot to tell my surgeon so none was taken. He told me he was looking for Lupus. I went to other doctors in between. The disease affected my legs, my back and other parts of my body. I would start getting a sort of imflamation and the area would become very red and hot and swell. It seemed that the pain would have to peak and then it would go away. After a couple of years of off and on preds the pain went away. Oh yes I had this weird rash i guess you would call it. It was only on the torso. It neither itch or did anything. it was round and red with white in the middle. any one have this? There is more to this but do not want to bore anyone.
Now we come to today. I have now been dx with polymyalgia rheumatic. I am on pred again. this time being more accurate. Has this happen to anyone also? I only found out about the polymyositis about a month ago. I notice it a autoimmune disease. My family is plague by these kind of diseases.
Sorry this is so long but I want to make sure what I have is polymyalgia and not the other again. Any info would be greatly appreciated.