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'm new and I'm scared. Terrified actually.
I'll try to make my story short ... but like many of you, it's so dang long until I think (and hope) I'm now finally getting some answers.
About 15 years ago, I developed a rash on my back and chest. Red, scaly, VERY photosensitive, kind of waxy. I had it biopsied ... and it came back as subacute cutaneous lupus. Lots of testing, a visit to a rheumatologist, no other real symptoms except for slight cervical node swelling and that wonderful thing called 'fatigue'. I had an ever-so slightly raised ANA but nothing else. I was patted on the head and sent on my way.
I pretty much enjoyed the next 10-12 years. A few episodes of tiredness (more so than usual), a case or two of pleuritis, some intermittent swelling of my lymph nodes, but it was all pretty benign.
About 3 years ago, I developed awful choking. Choking, choking, choking. A dry nagging choke/cough. I thought for sure I had a tumor in my throat. I went to an ENT physician and he immediately diagnosed silent reflux. HUH? I never even had heartburn. Duh ... that's why they call it 'silent'.
Off to a GI doctor I go. Lots of tests. My gastric empyting study showed gastroparesis. My Bravo pH test showed the worse case of reflux my GI doc had seen (DiMeester score of 94). We tried everything as far as diet changes, pills, etc. I was even having terrible reflux while on every pill I could handle (we repeated the Bravo while on meds). We finally decided that I needed to undergo a Nissen fundoplication.
Off to a surgeon I go. I have the Nissen and try to move forward with my life.
Next thing I know, I get AWFUL diarrhea. Just terrible. I'm tested for every bug to be found in my poo ... it's all fine. I undergo a colonoscopy and biopsies show lymphocytic colitis. My GI and my primary doc think it's time for me to see a rheumatologist again. During this time, I also had a barium swallow which showed esophageal motility issues.
Off I go to the rheumatologist. He looks through my chart ... not even examining me or really even making eye contact with me. I told him the only other thing that was going on was that the chest rash was getting bigger. He started to end the visit and I asked him, "Do you even want to see the rash?". He said, "Oh, ok." I lifted up my shirt, he took a look at it, and flatly said (and I quote), "I'm not impressed." He ran some bloodwork, my ANA came back negative a week or so later, and he patted me on the head and sent me on my way.
Next, my primary care doctor found a suspicious mole on my back. It was biopsied and came back as a melanoma in-situ. I needed a wide excision.
Off to the dermatologist I go. He does the wide excision, all margins are clear and he starts following me every 6 months. At the first 6 month visit, he notices the rash on my chest. I told him it was slowly but surely getting larger. "Let's biopsy that thing, shall we?", he said. It comes back as morphea. He thinks I have scleroderma. I HAD been feeling pretty crappy, muscle/joint aches and pain, hands swelling up, and the terrible choking continued.
I hated complaining though ... it made me feel whimpy and even my family doesn't really put up with it well. I'm sure you all know what I'm talking about ... people who just don't GET IT that this is not a good feeling, I feel like I'm walking through water, and no matter how much 'rest' I get, it never seems to really end. Besides that, I had, up to this point, been told I had NOTHING. My dermatologist thinks it's time to see a 'specialist' in scleroderma.
Off to the scleroderma doc I go. A 'good' one too ... very respected supposedly, practicing in a large teaching hospital with a dedicated scleroderma unit. Wow ... I'm finally going to get some answers. I wait 6 weeks to see him.
Well, he walks in, takes one look at the coffee cup in my hand (I had traveled 3 hours to see him and had a late afternoon appointment), and asked how long I had been 'addicted' to caffeine. Jesum crow, I normally drink two cups a day. Well, let's just say the visit went downhill from there.
He thought it was just morphea, nothing really. Do you have Raynaud's, he asked. Well yes, I do. I started with it a few years ago and I thought I was just getting old. Do you have telangectasias? Well yes, I do. Again, I just thought I was getting old. He runs the classic ANA test ... and it's negative. He pats me on my head and sends me away.
OK, I'm not sick. But my friends and family are sick of me at this point! I'm not kidding. So what's the disease theory of week for you now?? I felt so alone.
I go to an allergist/immunologist to see if allergies are making me choke. He sees a ton of eosinophils in my nose but I test negative to ANY allergens. He also had an under-graduate degree in rheumatology, so he thinks I need to go back to see that rheumatologist I saw a few years back. I about gagged. HIM?? I stomp my feet a few times in protest, and then I make an appointment.
I saw him three weeks ago. Again, he hardly even looked at me at the start of the visit. For the first time, I lost my cool with a doctor. He was about to pat me on the head and send me on my way.
l told him, "Listen, I'm not LOOKING to be sick, but something IS wrong. I'm only 52 years old and I have ALL these problems (gastroparesis, esophageal problems, lymphocytic colitis, Raynaud's, telangectasias on my hands, face, and arms, fingers swelling up like Mickey Mouse's paws in the morning, feeling like I'm carrying weights all over my body, blah, blah, blah.). Someone needs to act like I MATTER to them and try to figure this out for God's sake. If I don't have an autoimmune thing, then fine ... maybe I was just dealt a bad hand as far as my health, but I need some answers and someone on my side to help sort through all this with me!!!!!!"
I think I kind of scared him. LOL. I'm sure people in the hallway could even hear me losing it.
He FINALLY examined me ... took one look at my legs and his eyes got wide. I have terrible livedo reticularis. Again, two visits and he had never even looked at me really. Yes, it's on my arms and my abdomen too. My knees are purple and my elbows are bright red. OK, OK, he says ... we're going to be drawing a ton of blood. Thanks be to God.
Honestly, I fully expected to return there, be told all is fine, get the usual pat on the head, and well, you know.
BUT ... I returned last week on Friday for the 'results'. He came in, sat down with my chart and for the first time really, he LOOKED at me. I knew something was wrong. It was actually kind of funny.
Here's what he found.
1. I have a negative ANA (titer is 1:32), but a POSITIVE Anti-Smith. He said only 2-5% present in this manner, but it is 99-100% accurate for systemic lupus.
2. I also tested positive for dermatomyositis with a positive Mi-2 antibody result.
3. I have positive anticardiolipin antibodies.
4. I have protein spilling into my urine, though my kidney function tests (BUN and creatinine are normal).
5. I have a moderate elevation in IMG.
6. I am showing an iron overload (probably the least of my concerns).
Well, well, well ... I had his attention this time.
And he had mine.
He is running a few more blood tests, starting me on Plaquenil immediately, and then probably doing even more testing. He doesn't want to start prednisone yet until the testing is completed, as it can skew results. He saw me to the door and said, "Lori, we're going to be together for a while ... this is just the beginning."
OH MY GOD ... this is long. I'm so sorry, but here's what I really wanted to say to all of you that are still reading this.
I have told NO ONE. Absolutely no one. I just can't bring myself to even admit all this to myself, much less to others who have heard diagnosis after diagnosis, and then get told, "No wait, it's this" ... or ... "No wait, it's nothing."
But I think we're now officially onto something(s) and I'm scared. Really scared. I wake up at night and find myself crying. I live alone and I'm scared of so much right now, especially a loss of independence. I know I'll pick myself up, get going, and start moving along again with all this ... but this is all so new. I'm also crying because they finally found SOMETHING ... I wasn't just being discounted and devalued again.
I really feel I have no one to talk to ... no one. My dog tries ... but she just doesn't get it and usually ends up falling asleep. :)
Any thoughts ... any comments ... anyone with a similiar story?
I'm new and I'm scared. Terrified actually.
I'll try to make my story short ... but like many of you, it's so dang long until I think (and hope) I'm now finally getting some answers.
About 15 years ago, I developed a rash on my back and chest. Red, scaly, VERY photosensitive, kind of waxy. I had it biopsied ... and it came back as subacute cutaneous lupus. Lots of testing, a visit to a rheumatologist, no other real symptoms except for slight cervical node swelling and that wonderful thing called 'fatigue'. I had an ever-so slightly raised ANA but nothing else. I was patted on the head and sent on my way.
I pretty much enjoyed the next 10-12 years. A few episodes of tiredness (more so than usual), a case or two of pleuritis, some intermittent swelling of my lymph nodes, but it was all pretty benign.
About 3 years ago, I developed awful choking. Choking, choking, choking. A dry nagging choke/cough. I thought for sure I had a tumor in my throat. I went to an ENT physician and he immediately diagnosed silent reflux. HUH? I never even had heartburn. Duh ... that's why they call it 'silent'.
Off to a GI doctor I go. Lots of tests. My gastric empyting study showed gastroparesis. My Bravo pH test showed the worse case of reflux my GI doc had seen (DiMeester score of 94). We tried everything as far as diet changes, pills, etc. I was even having terrible reflux while on every pill I could handle (we repeated the Bravo while on meds). We finally decided that I needed to undergo a Nissen fundoplication.
Off to a surgeon I go. I have the Nissen and try to move forward with my life.
Next thing I know, I get AWFUL diarrhea. Just terrible. I'm tested for every bug to be found in my poo ... it's all fine. I undergo a colonoscopy and biopsies show lymphocytic colitis. My GI and my primary doc think it's time for me to see a rheumatologist again. During this time, I also had a barium swallow which showed esophageal motility issues.
Off I go to the rheumatologist. He looks through my chart ... not even examining me or really even making eye contact with me. I told him the only other thing that was going on was that the chest rash was getting bigger. He started to end the visit and I asked him, "Do you even want to see the rash?". He said, "Oh, ok." I lifted up my shirt, he took a look at it, and flatly said (and I quote), "I'm not impressed." He ran some bloodwork, my ANA came back negative a week or so later, and he patted me on the head and sent me on my way.
Next, my primary care doctor found a suspicious mole on my back. It was biopsied and came back as a melanoma in-situ. I needed a wide excision.
Off to the dermatologist I go. He does the wide excision, all margins are clear and he starts following me every 6 months. At the first 6 month visit, he notices the rash on my chest. I told him it was slowly but surely getting larger. "Let's biopsy that thing, shall we?", he said. It comes back as morphea. He thinks I have scleroderma. I HAD been feeling pretty crappy, muscle/joint aches and pain, hands swelling up, and the terrible choking continued.
I hated complaining though ... it made me feel whimpy and even my family doesn't really put up with it well. I'm sure you all know what I'm talking about ... people who just don't GET IT that this is not a good feeling, I feel like I'm walking through water, and no matter how much 'rest' I get, it never seems to really end. Besides that, I had, up to this point, been told I had NOTHING. My dermatologist thinks it's time to see a 'specialist' in scleroderma.
Off to the scleroderma doc I go. A 'good' one too ... very respected supposedly, practicing in a large teaching hospital with a dedicated scleroderma unit. Wow ... I'm finally going to get some answers. I wait 6 weeks to see him.
Well, he walks in, takes one look at the coffee cup in my hand (I had traveled 3 hours to see him and had a late afternoon appointment), and asked how long I had been 'addicted' to caffeine. Jesum crow, I normally drink two cups a day. Well, let's just say the visit went downhill from there.
He thought it was just morphea, nothing really. Do you have Raynaud's, he asked. Well yes, I do. I started with it a few years ago and I thought I was just getting old. Do you have telangectasias? Well yes, I do. Again, I just thought I was getting old. He runs the classic ANA test ... and it's negative. He pats me on my head and sends me away.
OK, I'm not sick. But my friends and family are sick of me at this point! I'm not kidding. So what's the disease theory of week for you now?? I felt so alone.
I go to an allergist/immunologist to see if allergies are making me choke. He sees a ton of eosinophils in my nose but I test negative to ANY allergens. He also had an under-graduate degree in rheumatology, so he thinks I need to go back to see that rheumatologist I saw a few years back. I about gagged. HIM?? I stomp my feet a few times in protest, and then I make an appointment.
I saw him three weeks ago. Again, he hardly even looked at me at the start of the visit. For the first time, I lost my cool with a doctor. He was about to pat me on the head and send me on my way.
l told him, "Listen, I'm not LOOKING to be sick, but something IS wrong. I'm only 52 years old and I have ALL these problems (gastroparesis, esophageal problems, lymphocytic colitis, Raynaud's, telangectasias on my hands, face, and arms, fingers swelling up like Mickey Mouse's paws in the morning, feeling like I'm carrying weights all over my body, blah, blah, blah.). Someone needs to act like I MATTER to them and try to figure this out for God's sake. If I don't have an autoimmune thing, then fine ... maybe I was just dealt a bad hand as far as my health, but I need some answers and someone on my side to help sort through all this with me!!!!!!"
I think I kind of scared him. LOL. I'm sure people in the hallway could even hear me losing it.
He FINALLY examined me ... took one look at my legs and his eyes got wide. I have terrible livedo reticularis. Again, two visits and he had never even looked at me really. Yes, it's on my arms and my abdomen too. My knees are purple and my elbows are bright red. OK, OK, he says ... we're going to be drawing a ton of blood. Thanks be to God.
Honestly, I fully expected to return there, be told all is fine, get the usual pat on the head, and well, you know.
BUT ... I returned last week on Friday for the 'results'. He came in, sat down with my chart and for the first time really, he LOOKED at me. I knew something was wrong. It was actually kind of funny.
Here's what he found.
1. I have a negative ANA (titer is 1:32), but a POSITIVE Anti-Smith. He said only 2-5% present in this manner, but it is 99-100% accurate for systemic lupus.
2. I also tested positive for dermatomyositis with a positive Mi-2 antibody result.
3. I have positive anticardiolipin antibodies.
4. I have protein spilling into my urine, though my kidney function tests (BUN and creatinine are normal).
5. I have a moderate elevation in IMG.
6. I am showing an iron overload (probably the least of my concerns).
Well, well, well ... I had his attention this time.
And he had mine.
He is running a few more blood tests, starting me on Plaquenil immediately, and then probably doing even more testing. He doesn't want to start prednisone yet until the testing is completed, as it can skew results. He saw me to the door and said, "Lori, we're going to be together for a while ... this is just the beginning."
OH MY GOD ... this is long. I'm so sorry, but here's what I really wanted to say to all of you that are still reading this.
I have told NO ONE. Absolutely no one. I just can't bring myself to even admit all this to myself, much less to others who have heard diagnosis after diagnosis, and then get told, "No wait, it's this" ... or ... "No wait, it's nothing."
But I think we're now officially onto something(s) and I'm scared. Really scared. I wake up at night and find myself crying. I live alone and I'm scared of so much right now, especially a loss of independence. I know I'll pick myself up, get going, and start moving along again with all this ... but this is all so new. I'm also crying because they finally found SOMETHING ... I wasn't just being discounted and devalued again.
I really feel I have no one to talk to ... no one. My dog tries ... but she just doesn't get it and usually ends up falling asleep. :)
Any thoughts ... any comments ... anyone with a similiar story?
You may live alone but you are never alone. We are with you and god is always there! talk and let things go and they will be looked after, you will be looked after!
take care
Roxanna
I have DM with crest scleroderma overlap, secondary PH, and RTL epilepsy. I currently am trying to find the cause of low, low blood pressure.
I deal with my health by thanking The Lord. I study the Word of God under my pastor daily. This illness has increased my spiritual muscle. I do not feel too well, but I am grateful for all the things I have learned as a result of this disease.
There are terrific people on this site. We discuss diet, exercise, and our drama with DM/PM. I am sure that you will have a lot to contribute to the group. Welcome!
I am only 31 but have gone through much of the same for the past 10 years or so. Going to various different doctors and given multiple diagnoses, but no one seemed to be able to connect the dots. I finally was diagnosed with ankylosing spondylitis (AS), another autoimmune disease, in November 2011, and for the first time in years I had hope. I felt like I finally had an answer for the things I've endured over the years. Since then, my diagnosis has been changed to psoriatic arthritis (PsA), which is very similar but presents a bit differently. While it is a relief to finally have a doctor believe you and be able to give you an answer, it is terrifying to know that your body is being ravaged by a disease, for which there is no cure. That being said, many of these diseases CAN be managed. It is difficult in the beginning, trying to find the correct treatment, but it does not have to be a death sentence. I was on meds for the AS (now PsA) for about a year, but then suffered a rare reaction (myositis) from Remicade, so now I am having to start all over again with the medications. It is a bit disheartening, but I have faith that everything will be okay.
Best of luck to you. I am glad that you are finally getting somewhere. It is a shame that you had to endure years of suffering, simply because of a doctor who couldn't take the time to really listen to and examine you. And it's an even bigger shame that we pay these doctors salaries, yet they think they are allowed to act like that. But I'll save my rant for another day ;)
Find the Myositis Association too for really good research based info and articles. Difficult site to navigate but well worth all the clicks to see everything they have. They even have a conference each year. I went in 2011 and hope to go again next year in 2014 when it will again be on the west coast...
Steroids usually help but he is right getting the testing first is important. I have had my swallowing issues resolved, and most of my other issues are tremendously better too. It is not fast or simple but you can do this... I totally talk to my dog, and some times she reads my mind. Hang in there, we are here to help support you too.
Shawna
It took 2-1/2 years and many doctors for me to receive a diagnosis. I was told that I had blood clots, bakers cysts, poplitiel cysts, a hematoma, rheumatoid arthritis, etc. But most of the tests came back negative. I kept getting worse and worse, until I could no longer roll over in bed, get up myself, dress/undress myself, walk stairs, drive, turn a doorknob or key, etc. In fact, I could barely walk at all even after someone got me up and on my feet. After 4 months of treatment by the neuros who diagnosed me, one of them told me that I was a few weeks away from dying whenever they first saw me, and they weren't sure they would be able to bring me "back from the brink." However, today I can do all those things again.
As for the crying, I can remember receiving my initial diagnosis and feeling that life was over. But it wasn't, and isn't. The Lord was gracious and gave me a new life, albeit different. For instance, I moved and now work from home. There is hope. And life will get better. It just takes time and (as Shawna always says) patience. Best wishes to you.
Friends and family try to understand ... but there is something very powerful when someone can say (or write), "I KNOW what you're going through."
Thank you again, from the bottom of my heart.
I'm still going thru the diagnostic process. However, since my labs have been negative, I'm not making much progress with my doctors.
I'm 40 yrs old and something is going on with me. I'm about to go off on my doctors, just like you did. I go to these doctors and they don't even examine me. Hello, how can you tell anything if you don't.
I have severe fatigue, a lot of times when I walk, especially up hills and up stairs it feels like my legs are made out of lead. I get rashes on my chest and upper back and neck. I have dysphagia where I've had to go thru physical therapy for choking and weakened throat/esophogeal/tongue muscles. I stopped going and I'm still not fixed. My muscle strengths range from 0/5 to 4/5 depending on what muscle group in my lower extremities, hips, pelvic floor. I've lost 30% of my body weight.
I have Raynaud's, telangectasias, levido reticularis on my legs & arms. My knees are also purple and my elbows have red rashes on them.
I went to see an allergist and he told me the same thing - I'm not allergic to anything. And he said that he think the rashes are related to an underlying condition. The pulmonary doctor they sent me to said that I have reduced lung functioning with my airway at only 65% of expected.
My dermatologist said that I have CREST and that I have gottron papules, violaceous poikoloderma, dermatomyositis symptoms.
I'm also having issues with my heart. And these are just some of my symptoms.
Yet, my old & new rheumatologists live by the labs/tests. Since they're negative, they just pat me on my head and send me away, even though the tests are not 100% sensitive. I've asked for a muscle biopsy or an EMG and they don't feel like it's necessary. And my new rheumatologist refuses to consider any other doctors reports - dermatologist, allergist, etc. She said she's doing her own work-up.
I really hope my labs will turn up something, sooner rather than later, or I can find a doctor that looks at my entire pic. In the meantime, I'm getting no treatment.
I know exactly how you felt. At least now your labs are positive and you know for sure and you can start treatment. That's great. I hope that it will help with your symptoms. I hope the doctors will actually start looking at me. NOW.