Does anyone else have this disease?
Does anyone else have this disease?
Within the past month my 4 yr old has been diagnosed with dermatomyositis. He started with the rash and we are having trouble with over-lying symptoms because he also has Cerebreal Palsy. They are looking at starting him on Methotrexate.. but first he has to have an EMG. How were you diagnosed? There is not a whole lot of info out there on this, it seems extremely rare. We are seeing an Rhuemotologist but I truly feel he is unsure about so much of this disease.
In 2007 I was diagnosed with Dermatomyositis. The disease had progressed to the point that I was unable to move on my own or swallow. Today, however, I am drug free, but not completely cured. In the beginning I addded changes to my diet, a supplements and high doses of prednisone. Thankfully, within a few months they brought me back to a normal life. There were several other medications that my doctor recommended I take. I decided against them and I am thankful that I was able to continue without them. I dont know what the answers are beyond seeking the Lord and allowing Him to direct you to better health, giviing your body nutrients, minerals and anti-oxidants, and removing as much sugar from your diet as you can. In 2007 I couldnt find any information regarding Dermatomyositis and was surprised to find you all today (I looked on this site years earlier). I heard a holistic doctor say, "auto-immune diseases have risen 80% since the late 80's. I hope you are all better today than when you posted your writings!!!
You are so right about finding information about this disease. Our journey started in 2001 right before 911, that was the most emotionally taxing year of my life. We went through the oral chemo, steriods, and IVIG treatments at a Childrens Hospital in Dallas. They were amazing, with diabetes and out of the age range of 16 we were not looking too hopeful. Again as everyone has commented that it is by the grace of God's love that my son survived this illness. He was told he would become totally blind because of the diabetes, and that he would not have children. Well here we are 11 years later and the dermato is back but he can see enough to take care of his 4 children, God is Good and Merciful. Our concern now is for my son to be strong enough to do what he can to care for his kids while his wife is the bread winner. Great grandma is coming down to help with meals at least until school is out and I can take over. Right now my main concern is finding a healthy meal regiment for Adam to have as much strength as he can. We used Advocare 11 years ago, so we are looking at protien rich foods and supplements to help this time around. Good luck to all with this illness. Maybe we can launch a blog with the grace of God to educate others.
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!
Dx DMS IN 1998. Re prednisone 2 years, then methotrexate for 4 years. Have been in remission, sort of, since 2004. Just diagnosed with interstitial lung disease and doc wants to put me on cellcept, but no go per Blue Shield. How do others get this okayed by insurance? Or is it because I'm on Medicare and "FDA has not approved its use for this disease"? Praying for miracles to happen here!