2 positive biopsies but negative bloodwork anyone else?

Hope Faith · 03-06-2009, 10:21 PM

Help I have had 2 possible skin biopsies for dermo or lupus over a 3 year span (I have had the rash for 5 years). I have a rash on my nuckles, wrists, elbows, around my eyes, and ankles. It comes and goes but never dissapears completely. I have looked at pictures on the internet and my rash looks more like dermo then any other rash. I have had bloodwork done twice but it has always been negative. I don't think I have muscle weaknes but have had a lot of lower back pain and hip pain at times over the last years but just believed it was because I was out of alignment as I have had xrays and I have no degenerative changes. I have been to my family practioner, an orthopedice doctor, a rheomatoligist and a dermatoligist. Not one of them can confirm I have the disease but they all say I might. Any suggestions. I am paranoid now and when ever I feel weak I wonder if it is just normal fatigue or the start of the muscle weakness that goes with the disease. Oh ya I am also a gulf war and OIF vet not sure if that has anything to do with it. Any insight I could get would be greatly appriciated.

meg82x · 03-28-2009, 06:28 AM

Hi i have polymyositis in remission but still have awful pains but my blood tests also come back normal. I think the rheumies dont know where to go after the blood comes back normal, i also find it very frustrating

Hope Faith · 07-01-2009, 02:25 AM

wow really so were you actually diagnosed without the blooldwork - because I think sometimes Doctor's think I am crazy even though I show them the biopsy results.

meg82x · 07-02-2009, 10:45 AM

i was diagnosed eventually with pm through a muscle biopsy and had that test where they put needles in your back. i have gone into remission now but still have alot of pain whre i have to take anti inflams evry day. My bloods are normal so i just keep taking the tablets, i havent come across anyone else in remission but still having pains. Also a doctor looked at my notes before talking to me and he said he was 95% sure i had lupus aswell but then they did a test and it was negative. I really dont believe alot of what doctors say anyway so i just keep my mouth shut! fed up of repaeting myself and getting no where!

Keith2468 · 11-05-2009, 07:15 AM

It is called "dermatomyositis sans myositis", basically dermatomyositis without the muscle disease symptoms.

Let us hope your disease stays at that stage, and from what I've read, in many people it does stay at that stage.

If you get muscle weakness, note down how it feels, is it the same on both sides of the body, what activities does it affect, which muscles? Take that info to your doctor.

http://emedicine.medscape.com/article/332783-overview

"Dermatomyositis-sine myositis, also known as amyopathic dermatomyositis (ADM), is characterized by typical cutaneous disease, no clinical evidence of muscle weakness, and normal serum muscle enzyme levels for at least 2 years.

"Patients who have undergone disease-modifying therapies such as corticosteroid or immunosuppressive agent treatment are not classified as having ADM.

"Some patients with ADM have abnormal findings on ultrasonography, MRI, or muscle biopsy. These patients have subclinical muscle involvement, but their condition may still be classified as ADM. Because many patients with ADM are not evaluated beyond clinical and enzymatic studies, many believe that ADM represents a systemic process that requires systemic therapies."