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Dermatomyositis

Lung Health | Last Active: Oct 8, 2021 | Replies (22)

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@ccates75

I have been recently diagnosed with DMS, with Interstitial Lung Disease, and COPD with emphasema (sp?). My diagnosis came last April after being symptomatic since 2006. Mine started from what I can tell alot differently than others. Mine started with 3 episodes of Bell’s Palsy, brain and lung infiltrates. They had misdiagnosed it as sarcoidosis, neurosarcoidosis and Lupus. I still don’t know if they even have it right. I have been to 4 states worth of specialtists, including the Mayo in Rochester, before coming to TX and getting the diagnosis through a thigh biopsy and a lung biopsy. The Mayo clinic had actually told me that this was all in my head!! And that I was just sleep deprived, had Sleep Apnea and was depressed. I still have not had a stable lab work set up since diagnosis, so frustrating and hurting so bad in the mean time! I don’t know much about DMS than what I read online, which isn’t much. So I am hoping to hear feedback from people that are going through the exact same thing! Anything helps!

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Replies to "I have been recently diagnosed with DMS, with Interstitial Lung Disease, and COPD with emphasema (sp?)...."

Dear ccates, I am going on my 10th year with DMS and ILD, was doing good for about 3 years then this summer I had caught a bug and my disease flared up big time and had to have another bronchoscopy done. Now am on prednisone again but tappering down and on cellcept, so far so good. We caught it in time to ware I did not do any more scarring in my lungs. I have learned to rest when your tired! Find a good rhumitologist ( can not spell) and a good lung doc. You know your own body. I was diagnosed at the mayo by a doc who was retired and just helping out for a few weeks. He at that time had only seen maybe 75 people in his career with DMS and ILD.
Did they do blood work and check for Anti-Jo 1 ? If they have not tell them you need that blood work done. Look up it up on the net. Do not give up, keep plugging along and make them listen to you. Am here for ya. If ya have nay more ?

Good Afternoon Buttons, Yeah, if I go by the date of when I first became ill and symptomatic, this is my 6th year with this. So glad to hear they caught your bug in time! I have had a few bronchoscopys myself, ugh, is all I can say. Right now I am on pain medicine and Imuran. I do have a great team of dr.’s thank God. I have a rheumatologist and a pulmonologist. My scarring in my lungs is a little worse now than last year. Because of the ILD they can’t put me on Methotrexate. Cause I guess it would just do further damage to the lungs. I am glad I have finally found somebody with the lung problems as well as DMS, that I can relate to. I’m not sure if they chacked for the Anti-Jo 1, but I know they have done everything under the sun, but I will ask my rheum. dr. when I see her next. But I just can’t seem to get to a stable spot with the meds that I’m on. It seems like every 3 months or so, my labs come back all screwy. So, I am waiting. Because that’s all I can do…It just sucks because there is never a day where I completely feel OK. I’m not expecting to feel 100%, but everyday, it’s either, im in alot of pain, headache for days on end, or nauseated all day. Ugh. Thanks for replying, it’s nice to have someone to talk to.

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