need help please - Myositis Message Board

Dxiechix · 11-30-2006, 06:12 PM

I have just gotten the results again from another RA. He says the EMG & NCV came back negative. Also the bloodwork they did at the same time all were negative. When I told him I was getting frustrated because they (all of them) have found nothing. His reply was "You don't want to have a disease do you?" I replyed "well no, but I would like to know what my problem is so I can start feeling better". He then said that it might help if I started doing aerobic excersises like walking,riding a bike, swimming ect. Then he said to wait an they would take more blood had shook my hand and left. He was with me for all of 5 minutes maybe. I left there in tears. I went straight to the hospital were I had been admitted on 10/16 for 4 days and got all the records they had for me so I would be better informed as to what all test they had ran on while I was in the hospital. Also I asked the RA for the records he had on me. What I would like to know is if it took you a number of doctors and months to get a diognasosis, what kind of test did the ones that did not diagnose have ranon you, what did the one that diognosed run? I am so confused right now. I see everyone talk about the types of tests and what their numbers were but I don't know if the test I have had done are the same as everyone else. I have all the lab reports but have no clue what I am looking at. Also what about the test that have showed up negative now, could that be because it is in early stages and harder to see. How often would you be tested again. It is my body and I know when something is not right. I am starting to feel like it is all in my head. I had something similar happen about 11 years ago. I had chronic pelvic pain for about 8 years before I got a doc. to believe me about the pain and they went in and found I had endometrious and scar tissue that commpletely encased both overies. I had to have a complete hysteractomy then. I had gone through 5 OBGYN's before getting the problem resolved. I do not think I could take the chronic pain again like that for a long time.

Elsie
Sanford, FL

tmjtrans · 11-30-2006, 10:21 PM

Sorry to hear your appointment did not go so well today. There are many different blood tests they run for DM and I could not tell you them all, but what I do know is the ones that my doctor watches.

CK - is muscle enzyme test that indicates if your muscles are "inflamed" or damaged. From what I understand if your levels are over normal (around 170-200), then there is a chance you have DM if you have the typical rash that goes along with it or PM
AST/SGOT - These are liver function tests but can also indicate muscle deterioration if elevated.
Rhematoid factor - This is an indicator of an inflammatory arthritis. It does not have to be elevated to have DM/PM
ANA - If positive, this could be possible lupus but is not necessarily positive with DM/PM. Mine was negative.

There are many more tests, rather obscure ones, but these are more common ones that many have heard of. If you are unsatisfied with your results, I would definitely seek a second opinion. Maybe if you call another rheumatologist, you could ask if he has any DM/PM patients, maybe then they would be more familar with the disease. My rheumatolgist has been in practice here for over 20 years and only has 25-30 patients with DM and not all of those are currently active patients, so it is definitely quite rare. Be persistent and you will get answers. Hopefully you don't have DM/PM and have something much "easier" to treat!