Does anyone else have this disease?
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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.
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OMG, I so feel for you. I am a mom and a dermatomyositis suffer. I had to do an EMG too, yuck. The Dermatologist saw me and said yep, this is DMS (my shorthand for this nastiness). I also had blood work and a BIG muscle biopsy to verify DMS and not polymyositis, etc.. I am one month + in on high dose prednisone and so far not getting better but I also have other issues that are making it difficult to treat. There doesn’t seem to be a lot that they know. I too feel frustrated and in the dark but, Mayo has saved my life before and the life of my son so I have faith they are doing the best they can.
I have had this for over 8 years. I also have the lung problem with it. Am on o2 24-7. Hang in there been where you are with the high dose of prednisone. I also see a rumetologist ( can not spell) for my muscles and a lung doc. The mayo really helped me 8 years ago. You will be very moody from the meds. and very hungry. Pray alot.
Hi, am so sorry your child has this. I have had mine for 8 years. My doc. did not know what i had so he sent me to the Mayo and they diagnosed it. It is rare but it seems more are getting it. I was on Methotrexate, now on Imuran. Am holding my own. I do have the lung problem with it. My rhuemotologist is great, because he has seen older adults with this disease, if yours is unsure find another one or bring him all the info. about this disease and he can read up on it. Am praying for your child and you. It is hard but I am here for ya.
I have had it for three years and it started with the skin and continuing decline in all muscle strength getting to the point I had problems swallowing. The muscle biopsy was the final indicator. I think everyone is still uncertain about the disease. I started out with methotrexate but started losing hair, so now am on imuran. I have also received two series of IVIG treatments and will probably have more the beginning of the year. It is a long haul and continuing battle. I had a previous specialist that didn’t listen when I told her I was getting weaker again. She just kept telling me my blood tests were fine. My general physician sent me to Mayo and the drs there told me the blood tests were not good indicators of muscle involvement. The drs I have are listening and very informative. I see them every six months or as needed. If you are having problems with your current dr, find another.
Thanks barbl for the imput. Hang in there. I still have not found many with the lung problem like I have. I read everything on this disease from all clinics. There is alot of info. out there.
When I was first diagnosed, I searched for info, but there wasn’t much out there. Of course, that was a few years ago. Evidently this has changed, or you’re better at searching it out. I did find a book called “Dermatomyositis” on Amazon for well over $100. Not sure I wanted to invest so much if it was a medical text. I’ll have to search again.
I checked into everything on the net. Also since this disease effects muscels ( cant spell today) check the MS web site. Found infom there also.
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!!!
Thank you Vicki S. The Grace of God and prayer is the only way I have lived this far with this disease. Going on my 9th year! Still have good days and bad starting getting this little twitch in my muscles these last few months. My lungs are the same still on oxygen, but you do not give up and you keep going forward!
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