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.
I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) this past spring. I felt it explained so very much of what had been going on with my body during the last several years.
I was put on prednisone and plaquenil. Time ticked by ... and only the rash(es) got better. I told the doc I was even feeling a bit worse as far as fatigue. Meanwhile, the protein in my urine went from negative, to trace, to 1+ the last time it was tested. I have now lost ALL sensation in the soles of my feet and in my fingertips. Let's not even mention the tremendous weight gain I've experienced. I was very frustrated.
Well, I switched rheumatologists. I went to a different doctor in the same group, but I had heard he was much more compassionate and listened to his patients.
I had my first visit with him this past Thursday.
He listened to everything. He was compassionate. And yes, he was 'kind'.
He examined me and then gave me his 'take' on things.
First, he thinks I'm out of shape. That's what is causing my aches, pains and discomfort.
Second, he wants me to get better sleep. That's what is causing my fatigue and feeling of heaviness.
Third, he wants me to quit smoking (I know I need to). He thinks that is causing my GI problems (colitis, gastroparesis, choking on my own spit due to x-ray proven dysmotility issues in my esophagus, etc.).
Fourth, he wants to do an injection into my shoulder (I have multiple areas of tendon tears and synovitis). My shoulder specialist feels this is due to lupus destruction of my joint ... and wanted to do an intra-articular injection under x-ray control to confirm this. The shoulder specialist feels I'm heading towards a total shoulder replacement. Well, this rheumatologist wants to do a simple injection to help with the discomfort and that should be that. "I think the joint is still maintained and we see this a lot as people age." Oooooo kay.
He is now reducing my prednisone ... and is going to taper me right off of it.
He feels most, if not all of my symptoms, are due to 'other factors'. Not lupus ... not dermatomyositis.
I was jut flabbergasted. I really was. He didn't even mention what might be causing the protein to rise in my urine.
I am beside myself now. OK ... I have lupus and dermatomyositis ... but NONE of my complaints are due to that. They are diagnoses that are asymptomatic at this point, I guess.
What do I do???? I feel like I FINALLY got an answer to what was causing my health issues ... and he completely said all of the things were caused by something else.
Please ... whatever advice or counsel anyone can offer would be appreciated ... even if it is for me to shut up and just do what he says.
I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) this past spring. I felt it explained so very much of what had been going on with my body during the last several years.
I was put on prednisone and plaquenil. Time ticked by ... and only the rash(es) got better. I told the doc I was even feeling a bit worse as far as fatigue. Meanwhile, the protein in my urine went from negative, to trace, to 1+ the last time it was tested. I have now lost ALL sensation in the soles of my feet and in my fingertips. Let's not even mention the tremendous weight gain I've experienced. I was very frustrated.
Well, I switched rheumatologists. I went to a different doctor in the same group, but I had heard he was much more compassionate and listened to his patients.
I had my first visit with him this past Thursday.
He listened to everything. He was compassionate. And yes, he was 'kind'.
He examined me and then gave me his 'take' on things.
First, he thinks I'm out of shape. That's what is causing my aches, pains and discomfort.
Second, he wants me to get better sleep. That's what is causing my fatigue and feeling of heaviness.
Third, he wants me to quit smoking (I know I need to). He thinks that is causing my GI problems (colitis, gastroparesis, choking on my own spit due to x-ray proven dysmotility issues in my esophagus, etc.).
Fourth, he wants to do an injection into my shoulder (I have multiple areas of tendon tears and synovitis). My shoulder specialist feels this is due to lupus destruction of my joint ... and wanted to do an intra-articular injection under x-ray control to confirm this. The shoulder specialist feels I'm heading towards a total shoulder replacement. Well, this rheumatologist wants to do a simple injection to help with the discomfort and that should be that. "I think the joint is still maintained and we see this a lot as people age." Oooooo kay.
He is now reducing my prednisone ... and is going to taper me right off of it.
He feels most, if not all of my symptoms, are due to 'other factors'. Not lupus ... not dermatomyositis.
I was jut flabbergasted. I really was. He didn't even mention what might be causing the protein to rise in my urine.
I am beside myself now. OK ... I have lupus and dermatomyositis ... but NONE of my complaints are due to that. They are diagnoses that are asymptomatic at this point, I guess.
What do I do???? I feel like I FINALLY got an answer to what was causing my health issues ... and he completely said all of the things were caused by something else.
Please ... whatever advice or counsel anyone can offer would be appreciated ... even if it is for me to shut up and just do what he says.
You have to fight for yourself. You can't just shut up and do what the doctor says if you don't agree with it. Before I was diagnosed, several doctors told me that I just needed to exercise more even though I could barely move and I kept telling the doctors that the person they were looking at was not the '"normal" me.
You cannot just do what the doctor suggests, even though they may be positive things, if it means you will deteriorate in the meantime.
I suggest writing down all of the things that flabbergasted you and all of your concerns. Tell the doctor you have a list that you need to discuss immediately before you can go forward with his recommendations.
You need to feel confident that you are being heard and that your major issues are being addressed. You also need to understand exactly why the doctor is recommending certain things. For example, you feel your GI problems are due to your diseases, but the doctor is implying it's due to smoking. Ask the doctor why he doesn't feel the diseases are the cause of the GI problems. Other smokers do not have your GI problems. How does the doctor explain that? Keep asking questions until you are satisfied with the doctor's answers.
You are your best advocate and you have to trust your instincts.
Wishing you peace and health,
Kathleen
I have chronic kidney disease with DM & overlapping Scleroderma. Protein in the urine is a big symptom of my kidney disease. I also have orange colored urine which is blood in the urine. Blood in the urine can also be invisible to the eye and that is called, microscopic hematuria. I have weight gain and fatigue too. My rheumatologist recommended the urologist after finding trace blood and protein in my urine. The urologist ran a cystoscopy which is a common procedure for blood in the urine to check for bladder cancer. When cancer was not found, I was referred to the nephrologist (kidney doctor). The Nephrologist ran several tests including a kidney ultrasound. I have glomerulonephritis or chronic kidney disease.
I would suggest that you consider seeing a urologist to check out the protein in the urine. The urologist will have better and more extensive urine testing that will give you good answers for the protein. I found that by the time my blood in the urine and protein came out as "trace" at the rheumatologist, there was actually a lot more than "trace" at the urologist.
I hope this helps. Keep us posted!