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.
Hello everyone,
Some of you may remember me and my nightmarish journey of trying to get a definite diagnosis. Well for those of you who remember my story, my derm diagnosed me with DM, based on my symptoms and a slightly elevated cpk. I could not find a rhuemy to go along with this because my blood work never shows the typical markers for autoimmune diseases so I bounced from doctor to doctor trying to find someone who could help me. Finally found a rhuemy who agreed with my derm, but they both decided they felt I had a mixed connective tissue disease because I have so many symptoms, but none that stand out for one particular disease. She finally diagnosed me with undifferentiated mixed connective tissue disease. The derm had me on 60mg of pred for about 6 mo's and then they both decided to taper me off because she wanted to do a muscle biopsy. Once I had been off for 2 mo's I saw her again and she said I see why the derm didn't do one, forget it your symptoms are too bad we just need to start another treatment. Once again she did a ton of blood work, 16 vials. Nothing showed except slightly high WBC, absolute neutrophils and my RBC. She put me on 400mg of plaquenil but after 3 days and 2 trips to ER I had to go down to 100mg because of migraines. So I am currently on 100mg of the plaquenil don't know if that's even enough to help. Been on that for about 6 wks and my derm put me on 1000mg of pennicillin VK. He said he doesn't know what else to do and because my WBC's are always slightly high maybe an antibiotic would help. He is very highly regarded in our community and the first person to acknowledge something is seriously wrong with me.
Anyway I'm not trying to write a novel, just want some input or suggestions if anyone has any. My symptoms are just continuing to get worse everyday. Every muscle & joint in my body hurts continually. I have an overall ill feeling, nausea, losing my hair, black circles under my eyes, hand tremors, constant muscle spasms & twitches. I do have a slight v rash on my chest that has started burning the last couple of days. I started choking on food and my voice has gotten deeper so I am having my throat scoped mon. Have lots of GI problems, my eyesight is getting worse, as well as my memory. I have 1 college degree and part of another and sometimes can't remember how to spell simple things or think of words I want to say. The list goes on and on and seems to just continue..
If anyone has any suggestions or advice I would greatly appreciate it. I have done tons of research myself, but am at a loss. Some of you seem really knowledgable about tests and certain things to ask the doc's to do. Any help would be greatly appreciated. I am very depressed because I was so active and fit, now I can barely move..
Thanks for listening and sorry for the novel..
Some of you may remember me and my nightmarish journey of trying to get a definite diagnosis. Well for those of you who remember my story, my derm diagnosed me with DM, based on my symptoms and a slightly elevated cpk. I could not find a rhuemy to go along with this because my blood work never shows the typical markers for autoimmune diseases so I bounced from doctor to doctor trying to find someone who could help me. Finally found a rhuemy who agreed with my derm, but they both decided they felt I had a mixed connective tissue disease because I have so many symptoms, but none that stand out for one particular disease. She finally diagnosed me with undifferentiated mixed connective tissue disease. The derm had me on 60mg of pred for about 6 mo's and then they both decided to taper me off because she wanted to do a muscle biopsy. Once I had been off for 2 mo's I saw her again and she said I see why the derm didn't do one, forget it your symptoms are too bad we just need to start another treatment. Once again she did a ton of blood work, 16 vials. Nothing showed except slightly high WBC, absolute neutrophils and my RBC. She put me on 400mg of plaquenil but after 3 days and 2 trips to ER I had to go down to 100mg because of migraines. So I am currently on 100mg of the plaquenil don't know if that's even enough to help. Been on that for about 6 wks and my derm put me on 1000mg of pennicillin VK. He said he doesn't know what else to do and because my WBC's are always slightly high maybe an antibiotic would help. He is very highly regarded in our community and the first person to acknowledge something is seriously wrong with me.
Anyway I'm not trying to write a novel, just want some input or suggestions if anyone has any. My symptoms are just continuing to get worse everyday. Every muscle & joint in my body hurts continually. I have an overall ill feeling, nausea, losing my hair, black circles under my eyes, hand tremors, constant muscle spasms & twitches. I do have a slight v rash on my chest that has started burning the last couple of days. I started choking on food and my voice has gotten deeper so I am having my throat scoped mon. Have lots of GI problems, my eyesight is getting worse, as well as my memory. I have 1 college degree and part of another and sometimes can't remember how to spell simple things or think of words I want to say. The list goes on and on and seems to just continue..
If anyone has any suggestions or advice I would greatly appreciate it. I have done tons of research myself, but am at a loss. Some of you seem really knowledgable about tests and certain things to ask the doc's to do. Any help would be greatly appreciated. I am very depressed because I was so active and fit, now I can barely move..
Thanks for listening and sorry for the novel..
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Thanks for your reply. Yes, I have been tested for Lyme disease and a list of other things and I do mean list. Even tested for arsenic, lead & mercury poisening. I am just getting more physically ill by the day. I live in Indiana and I'm a single mom. I have checked into going to Cleveland Clinic & Mayo , but they won't accept the type of insurance I have. There is no way I could afford the medical bills on my own. There is a ton of cancer that runs in my family and I have been concerned that maybe I have some underlying cancer they're not finding. My WBC's are only slightly elevated though. I don't really know what other tests are markers or indicators of cancer.. Idk I am just grasping at straws at the moment.. Thanks for your help..
I got DM in 2010. I learned about my additional Scleroderma autoantibody in 2012. I have a fatty liver and kidney disease. I also have DM with muscle flares in the arms & legs and mild rashes.
Here is a helpful video that explains several autoimmune diseases including DM/PM. In the video, Dr. Tamiko Katsumoto M.D. discusses several autoimmune diseases, requirements for diagnosis, autoantibodies, and medications for each disease:
Overlapping Conditions in Systemic Sclerosis - You Tube www.youtube.com/watch?v=3NFlz6U7zBY
The video is one hour. You can also pull the video up by title on You Tube. I am thinking the video might be helpful in answering some questions or in explaining why things happen a certain way.
Recently, I came back with excellent blood work from the rheumy. The problem is I am having nausea, low grade headaches, and a feeling of "not enough blood to the head." I will see the gastroenterologist, cardiologist and kidney doctor next month. I think the issues are kidneys and/or heart too.
I am obviously not a doctor. I am thinking a deeper voice, muscle twitch, hair loss, could be possible thyroid issues? Thyroid problems often do not show up on blood test. A thyroid specialist might be helpful in ruling out a thyroid issues too.
Keep us posted.
Sometimes you have to ask for permission to get the opportunity to take care of yourself.
So many of your symptoms are the same as mine. Has any doctor mentioned ME/CFS? ME/CFS has no definitive diagnostic marker so if you have enough of the symptoms, they will say you have it. So many of these illnesses mimic each other and I have been told by several doctors that it may take years for anything to show up in the blood work. The only thing that show up in mine is reactivated viruses and a high aldolase level.
I feel your frustration. I was a gym rat and in great shape until I got sick. Now I can barely wash my hair because I am so weak.
I am a fellow Hoosier even though I live in Florida. I am from Vincennes, Indiana originally but mostly grew up in Bloomington. Where do you live?
Mel
This is all so frustrating and I feel myself sinking into a deep depression. I have always been a fighter, but at the moment I am just physically and mentally exhausted. Every week it's a new symptom, but we still can't be 100% certain of what you have but we think it's the UMCTD... Ugh!!! Is it or not... I just want to know how to proceed with my life. My family hasn't been the greatest support system. They have said lately that I def don't look like the same person anymore but before that all they would say is omg all you talk about is your health, non stop and you obsess over it. I know they're right, but I can't seem to stop doing it. This is all just maddening and overwheling.. My rhuemy tells me oh your hairs falling out and gave me cream for it ,but said she's still not 100% on my diagnosis. I think if I just knew exactly what I was dealing with maybe I wouldn't obsess over it. I am literally scared to death. Things were going great in my life and then wham, the rug was jerked right out from under me and it took my life with it..
I am so sorry you are going thru this. Yes DM is part of MCTD. It is a mix of 4 different Auto immune diseases.
Loosing hair is typical with some DM and so are swallowing and choking issues. Hoarse voice, those all go together. It is not uncommon for this disease to take years to diagnose, but you have some classic sign now...
If you cannot get to a major medical teaching hospital, then demand a muscle biopsy and get that part over with so you can start some steroids... EMG may or may not show muscle damage.
I so wish it were easier...
have you joined the TMA at Myositis.org? they are free to join
they have an annual conference and videos online of older conference persentations. great place to read and learn from researched articles and such.
Blessings to you, it is very hard to not have an answer and be so weak you can barely fight for yourself.
Shawna an RN with DM