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.
Hope everyone enjoyed the holidays... It has been forever since I have been on here. In my last post I think I stated that the holidays were extremely busy for my cleaning business. I managed to work myself into barely getting out of bed.. The prednisone seemed to be helping at first, but not as much anymore. I am still on the 60mg a day. My pain is worse again, very fatigued and shortness of breath is worse. My family says I just work and do too much. I don't know maybe they are right, but I think I have this fear if I stop or slow down, it's all over. I know that probably sounds stupid. I am still not working out, which has been the hardest thing of all for me. I went to the gym one day last week, but definitely could not do my usual and got so short of breath had to just quit. Soooo frustrating!!!! I just keep telling myself my job is a workout in itself and for now It is all I can do to make it to work.
When I saw the NP she said all my symptoms seemed to fit DM, but she really knew nothing about it. She made me an apt. with the Rhuemy there. Not thrilled!! I saw him a couple years ago and he diagnosed me with muscle fascitis. I did see my local neurologist and he said I just have so many symptoms. A little of this and a little of that, but not one major thing that jumps out. I gave him a list of tests that I found on the myositits site and ones you all suggested. He picked a few and ran them. My cpk is back to normal, crp was normal, adolase was normal. WBC high, neutrophil high, monocytes and lymphocytes low. He also ran the anti-jo 1 which was normal. He is sending a letter to a Neurologist I see in Indianapolis. I also have severe neuropathy in one leg due to a birth defect so I see this dr. in Indy for that. My local neurologist says this guy is the best in the state and he will know what to do. Let's hope, I am just at my wits end with all this. Can't tell you the last time I felt well. Which I'm sure most of you feel the same.
I know some of you mentioned tests I need to have them run and by looking at myositis site I feel like I have had most of them. Any other suggestions. Is there anything else I should ask for concerning my lungs? I thought the anti-jo 1 was for that, but is there anything else. I see this neurologist Jan 11 and I want to be totally prepared. I am not an assertive person, but I am determined to be at this apt.
My family dr. is blowing me off even more. As I mentioned I keep records of my test results and other medical documents. I recently noticed that I had a BUN test and glucose that were high. He never even mentioned this to me. When I saw him last month I told him of my diagnosis from the dermatologist and he seemed almost irritated. He said well I guess if that's what he says, but you have fibromyalgia.. Ugh!! I just want to scream.. I have never been a depressed person, but all of this is making me extremely depressed and anxious... I know that's why I keep working so much and pushing myself. I just want to be normal again.. Sorry this is so long.. I always tell myself to keep it short and simple, but get on here and get carried away. I just literally have no one to talk to. Bless you all for listening to my ranting...
When I saw the NP she said all my symptoms seemed to fit DM, but she really knew nothing about it. She made me an apt. with the Rhuemy there. Not thrilled!! I saw him a couple years ago and he diagnosed me with muscle fascitis. I did see my local neurologist and he said I just have so many symptoms. A little of this and a little of that, but not one major thing that jumps out. I gave him a list of tests that I found on the myositits site and ones you all suggested. He picked a few and ran them. My cpk is back to normal, crp was normal, adolase was normal. WBC high, neutrophil high, monocytes and lymphocytes low. He also ran the anti-jo 1 which was normal. He is sending a letter to a Neurologist I see in Indianapolis. I also have severe neuropathy in one leg due to a birth defect so I see this dr. in Indy for that. My local neurologist says this guy is the best in the state and he will know what to do. Let's hope, I am just at my wits end with all this. Can't tell you the last time I felt well. Which I'm sure most of you feel the same.
I know some of you mentioned tests I need to have them run and by looking at myositis site I feel like I have had most of them. Any other suggestions. Is there anything else I should ask for concerning my lungs? I thought the anti-jo 1 was for that, but is there anything else. I see this neurologist Jan 11 and I want to be totally prepared. I am not an assertive person, but I am determined to be at this apt.
My family dr. is blowing me off even more. As I mentioned I keep records of my test results and other medical documents. I recently noticed that I had a BUN test and glucose that were high. He never even mentioned this to me. When I saw him last month I told him of my diagnosis from the dermatologist and he seemed almost irritated. He said well I guess if that's what he says, but you have fibromyalgia.. Ugh!! I just want to scream.. I have never been a depressed person, but all of this is making me extremely depressed and anxious... I know that's why I keep working so much and pushing myself. I just want to be normal again.. Sorry this is so long.. I always tell myself to keep it short and simple, but get on here and get carried away. I just literally have no one to talk to. Bless you all for listening to my ranting...
Regarding your working out and running your cleaning business, you really need to take time to rest. You're not helping yourself when you overdo it. Take care of yourself, and best wishes for a proper diagnosis.
You might consider asking about Mixed Connective Tissue Disease. MCTD is collagen vascular just like DM. MCTD can be with or without DM. I have talked with many people who describe the doctors arguing over what is happening and that is often a hint that it might be MCTD. You can start with MCTD and develop DM later in the process too. Do ask the doctor about this possibility.
You can have heart/lung problems without anti-jo1 autoantibody. Anti-jo1 is a possibility for a specific type of lung problem called, interstitial lung disease. I have DM with Scleroderma and the heart/lung condition called, pulmonary hypertension.
I will put in some prayers for a correct diagnosis. Good Luck and keep us posted!
Hang in there and you will find the path. Be sure to document specifics about your symptoms and share them. It is often the key to diagnosis.