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.
Thanks for all your advice and suggestions concerning my apt. yesterday with the NP. She was very concerned and listened to me. Looked at the notes from the Derm and then told me even though she worked in rheumatology she knew very little about DM & had never seen a patient with it. She is getting me in to see one of the rheumy's there Jan 14. I actually saw him a couple of years ago when my symptoms first started and he diagnosed me with muscle faciatis. I wasn't too impressed with him. There is another Dr. in the practice that I have heard really good things about, but I was told since I have already seen this guy, I have to see him again. She said even if I could see the one I wanted, it would take months to get into her.
The NP said my cpk wasn't extremely elevated. I said yes the Derm & I talked about that and there are other people with it that don't have an extremely high cpk. She wasn't too concerned about some of the other tests that were neg. She said they weren't good enough indicators. I took a list of tests from the myositis website and the ones you all suggested. She didn't even know what they were and just told me to let him know when I see him. What a nightmare.
To answer your question Blockparty, yes I have checked out the myositis website. Ever since the Derm I have diagnosed me with this based on my elevated cpk and symptoms I have been reading on it everyday. The problem is, I can't find good healthcare or anyone in my area who really knows what it is. I was told to go to Indianapolis. I live a little over an hour from there. That is where I was treated so rudely by the rheumatologist. She did know what DM was and said I didn't have it based on the numbers from my cpk. She wouldn't do any of the tests I asked for. The only one she did was an adolase test. They just called me 2 days ago and said it was within normal limits. I read you should fast for this to get an accurate test. I had just eaten lunch and they never said a word to me. I'm not sure if it mattered,
I am just at my wits end.. From everything I have researched I feel in my gut this is what I have. All of my symptoms fit perfectly. I just can't seem to find any good doctors and the ones who do listen, don't know much about it. My GP blows me off about everything. When I saw him last week, I told him my derm wanted me checked for malignancies. He told me I was fine, I didn't have cancer. He said I have had a brain mri and ct of my chest recently that was good enough. I am just really worried about all of this. My Dad died a few years ago from non hodgkins lymphoma, my mom currently has chronic lymphatic leukimia. I myself have a huge scar across my chest from malignant melanoma I had a few years ago and I also had to do a topical chemo on my face for multiple types of skin cancer all over my face, neck and ears. Now I have this lung condition and my GP says it's no big deal. Sorry to go on and on. As you can see I am very frustrated and concerned about my health. I can't tell you the last time I felt well. I haven't been able to go to the gym in 2 months. The last time I went I couldn't move for at least 2 days. As you can see it;s 3 a.m and I'm wide awake and that's after taking sleeping medication.
I just want my life back but I am realizing that is probably not going to happen. I think if I could just find good doctors and healthcare I wouldn't feel so negative right now. I know I need to get off my pity party... Thanks for letting me listening & letting me rant, but most of all thanks for understanding!!!!!!!
The NP said my cpk wasn't extremely elevated. I said yes the Derm & I talked about that and there are other people with it that don't have an extremely high cpk. She wasn't too concerned about some of the other tests that were neg. She said they weren't good enough indicators. I took a list of tests from the myositis website and the ones you all suggested. She didn't even know what they were and just told me to let him know when I see him. What a nightmare.
To answer your question Blockparty, yes I have checked out the myositis website. Ever since the Derm I have diagnosed me with this based on my elevated cpk and symptoms I have been reading on it everyday. The problem is, I can't find good healthcare or anyone in my area who really knows what it is. I was told to go to Indianapolis. I live a little over an hour from there. That is where I was treated so rudely by the rheumatologist. She did know what DM was and said I didn't have it based on the numbers from my cpk. She wouldn't do any of the tests I asked for. The only one she did was an adolase test. They just called me 2 days ago and said it was within normal limits. I read you should fast for this to get an accurate test. I had just eaten lunch and they never said a word to me. I'm not sure if it mattered,
I am just at my wits end.. From everything I have researched I feel in my gut this is what I have. All of my symptoms fit perfectly. I just can't seem to find any good doctors and the ones who do listen, don't know much about it. My GP blows me off about everything. When I saw him last week, I told him my derm wanted me checked for malignancies. He told me I was fine, I didn't have cancer. He said I have had a brain mri and ct of my chest recently that was good enough. I am just really worried about all of this. My Dad died a few years ago from non hodgkins lymphoma, my mom currently has chronic lymphatic leukimia. I myself have a huge scar across my chest from malignant melanoma I had a few years ago and I also had to do a topical chemo on my face for multiple types of skin cancer all over my face, neck and ears. Now I have this lung condition and my GP says it's no big deal. Sorry to go on and on. As you can see I am very frustrated and concerned about my health. I can't tell you the last time I felt well. I haven't been able to go to the gym in 2 months. The last time I went I couldn't move for at least 2 days. As you can see it;s 3 a.m and I'm wide awake and that's after taking sleeping medication.
I just want my life back but I am realizing that is probably not going to happen. I think if I could just find good doctors and healthcare I wouldn't feel so negative right now. I know I need to get off my pity party... Thanks for letting me listening & letting me rant, but most of all thanks for understanding!!!!!!!
It is true that it may take several months to get in to seeing an excellent physician, but once you are in then you will have regular appointments.
I know you were surprised that the nurse practitioner did not know about DM/PM. You need to see a fully licensed rheumatologist. ALL fully certified doctors should be familiar with DM/PM. I live in Houston. All of my doctors from the rheumy down to the nephrologist (kidney doc) are totally familiar with my DM. I try to find doctors with good communication skills.
I think you should discuss your test results with a licensed physician who will tell you what your test mean. You have many reasonable concerns about your lungs. The doctor should tell you if your symptoms are passing or if something may be developing.
You will find good health care. See only the fully licensed doctors. Keep us posted.
My question I came up with after each dead end was "Now what? I'm still having XX symptoms." It really forced doctors to continue to work with me. Do I need to see a different doctor? If so, who? What test do I need? How can I find out what is wrong so I feel better. They don't get to give me the results and drop it. If it wasn't what you tested me for, then what because I am still not well?
I kept a huge file of all my medical records. Test results and notes from each visit with each doctor. That came in handy many times. When I went to see a new doctor, I would copy all my stuff for my new file. Saved time because I wouldn't have to wait for them to get my records.
Stick with it. My recommendation is to ask "Okay, then what is next?"
I am so sorry, it may take determination but you are close...
Keeping all your records is important too.
Shawna
To answer many of your questions. The Rheumatologist I saw In Indianapolis was actually at the University Hospital which is highly recommended where I live. I have been there for other things and have always received good care. I looked several Rheumatologist up from there on Healthgrades and compared it to the list from my insurance carrier. She had the first available appointment and although she didn't have a lot of ratings, the ones she had were good. Someone that has Scleroderma gave me the name of another Rheumatologist in Indianapolis and said he was excellent, but of course he doesn't accept my insurance. I am going to go back to my provider list and try to weed people out again. I can't afford to go outside my provider. Single Mom, 3 kids, you get the picture...
I also started keeping a file of all my tests, doctor's notes, etc.. I too take it with me every time I see a new doctor. I am keeping in close contact with the Dermatologist. Thank God for him and his nurse, they have been great. I am not an assertive or outspoken person at all, but I am persistent and I'm learning that I have to be assertive about my health.
Do most of you still work? I own & operate a Cleaning & Organizing business. I am finding it harder and harder to work. I feel better on the Prednisone, then I go to work and work all day. By the end of the day I am shot. My symptoms are all worse again and I feel horrible. My job is very physical. My son & another young guy work for me part time, but I am super OCD and can't seem to stop myself from doing things I know I shouldn't. As I have stated in many of my post, I also used to train people at the gym part time. I have stopped that. I haven't even been able to go myself for 2 mo's. Everyday I tell myself I'm going back tonight because it was such a big part of my life, but I feel too bad from working all day. Ugh!!! this is all so frustrating. I didn't plan on joining this group to be Debbie Downer, but as you can see, just a wee bit frustrated with life at the moment. Reading your comments, suggestions & the things some of you have gone through are helping me push on.
Thanks again!!!! Mel
Working does wipe me out. I don't do much in the evenings and sometimes making dinner is just too much work. I try to do sedentary tasks (knitting, reading, etc) so I don't spend more energy and can work the next day. I know it would be ideal to not work but I need the paycheck and insurance for as long as I can. I honestly wouldn't be working anymore if I had to go into the office each day. I also travel for work. I used to travel 1-2 times a month but last month, I told my boss I am not traveling anymore. We are trying to work with that and see what we can do to accommodate that. It is tough to get to that point because it does negatively impact my work performance. It was just getting too hard.
Only you know what is right for you. I do think when you get your medications adjusted, you will feel better. You will find out what your limits are and probably won't be as likely to overdo allowing others to do it instead. There was a post here a few years ago about the "spoon theory". I think it is the best description of what our world is like. If you can find it, it would be fabulous.
Hang in there.
I do think a cleaning business requires excellent stamina. You might consider different and new ways to do your job. Maybe take some time off and consider hiring more employees? It may be a good time to move into doing front office work while the employees do the labor. There are many options to consider that would work.
All of us deal with family and friends who think we look good. Pain, weakness, fatigue, and the icky feelings are not visible to people. I have found that if I educate others about the disease then this is helpful.
You are doing so many things well. Stay positive and patient. You will know what to do as time unfolds.
I am very sorry you are having difficulty finding a doctor. If you would like the name of who I see I would gladly share it with you. He is difficult to get in with and there has been frustrations with the office staff. BUT, he diagnosed me quickly via a muscle biopsy and when I didn't respond to treatment, he quickly sent me to Cleveland for a second opinion and has been willing to follow the Cleveland Clinic's (my "boss" Rheumy) advice for my continued care.
Good Luck and you can contact me if you want!
If you go the route of the MDA clinic I would love to hear about your experience. I called them early on but the doctor they gave me an appointment with didn't have good review so I cancelled. But, there is a great doctor at their Clinic.