Hi, My name is Michael, Ill be 19 in August. I was dyignosed with dermatomysitis Febuary '05. I had to have a feeding tube in because my muscles in my throat went weak and i lost 75 pounds in 2 months. Its been over a year and a half and i still cry almost every day of what happened. Im doing alot better than before but i still have a lot of weakness and my back hurts all day. It feels im stuck in a 70 year old mans body. I cant imagine what you went through!!!! Your in a wheel chair! I just wish that therecan be a miricle that are pains will go away and be normal. Atfirst i didnt know what was going on? I started losing allthis weight at first and all of a sudden it hit me. I got rashes just after that and then after i couldnt pick myself off the floor. Do you stilltake any medications for this? I tried physical therapy to stregthen my backup cause how bad it is, but i didnt get any results just more pain. I filed Social Secruity, cause i think i can hardly work anymre but they feel that im too young and ill get better, but you cant get better, thers no cure. So i hope you can respong to me and tell me what you think and suggest.
Last edited by moderator2; 08-21-2006 at 08:34 AM.
Re: dermatomyositis--treatment that brings optimism to some
To start with i'm unhappy about something else!
Just read the last reply - and I just want to say don't give up hope! I was 21 when I was diagnosed, i too tried to claim some benefits when I was really poorly from the social security and was too turned down. I think with an illness like this you need to almost will yourself to get better. I was VERY ill but also VERY determined that it wasn't going to beat me and I cetainly didn't want to take the steroids all of my life. I know that dermatomyositis can have varying after-affects. Some people recover, some have lasting effects. But I think you stand a better chance if you will yourself to get better. After all its an auto-immune illness, so in effect it is our own bodys attacking us. I still get very minor flare ups, and my strength isn't 100%, but i'm ok. I've copied and pasted my story from another thread I posted on, so that you don't think this illness is all bad.
I was diagnosed with dermatomyositis in December 2001. My GP misdiagnosed me 3 times, i finally saw another doctor who referred me to a rheumatologist. My symptoms came on gradually over a space of 2 months before I was diagnosed. It started with a rash on my elbows which spread up my arms, my fingers started getting purpley nodules on them, i started getting really achy backs, my arms got weaker and weaker - first change was finding it difficult opening doors - progressed to me being unable to brush my hair, do up my bra, or hold a knife and fork. I had tightness and aches in my fingers, my thigh muscles were very weak, i got breathless really easy and my body temperature was high. I also had the butterfly rash over my nose, my eyelids were also affected and i had a pink disc shape on my forehead. I felt so weak and tired. I was admitted to hospital where I had LOADS of tests done on me over a period of weeks (including muscle biopsy, skin biopsy, blood tests etc). My enzymes were also coming back normal, but the specialist told me I had all of the classic physical symptoms of dermatomyositis. My MRI scan showed the typical discolouration of my thigh muscles that you get with dermatomyositis. I was released from hospital without treatment, but by my follow-up appointment the following month I was a lot worse. I could hardly put one foot infront of the other, and I was also developing swallowing problems. My specialist put me on 20mg of prednisolone which were gradually reduced over time. The dermatomyositis settled with the steroids after about 7 months. I then took the prednisolone at a low dose to maintain my health. After 2 years of steroids I then came off them completely. I now haven't taken steroids for 2 years and I have no real symptoms of the illness. The specialist has told me that it may keep recurring or it might have been a one-off, there is no way of knowing. I get VERY mild flare-ups every now and then, but up until now at least, i've not had to re-medicate, it has always settled itself down.
I should also add, the doctors didn't envisage me coming off the medication as quickly as I did. When my dermatomyositis was at its peak i had specialists from round the country coming to examine me, to see the typical signs of the condition, because it is fairly rare. I also had an entourage of student doctors at every appointment I had with my specialist! When I came off the steroids and was 90% myself again my specialist was really pleased and also amazed at the speed of my recovery, because the dermatomyositis had been so bad. Hope you make a good a recovery as you possibly can. Although with dermatomyositis we all know it can reccur, I know if mine recccurs I will fight it mentally just as much as I fought it the last time.
I, too, had the student docs observing. I was only 6, so most of the details of the disease were not told to me then. I have had to find out what I could now that I'm an adult. When I had DM (it's in remission) I lived in Canada and there were only 3 of us in the country with it at that time. Very little was known. 50/50 chance of surviving it back then, and I think at least 1 or maybe both of the others died. Medicine has come so far and they know way more about DM then they did when I had it. I took Cortisone for 2 or 3 years. As far as I know that was my only med. I wish you all the best in recovering and getting this into remission.
I know that this is not an easy time for you, but you will get through it. I was diagnoised with dermatomysitis when I was around 9 years old. Actually, I had been sick for several years, but the doctor's in my city did not have a clue. This was a very rough time for me and my family. I was always sick and in the hospital. I was very scared. You have no idea on what to expect.
You have to keep the faith and fight with all that you have in you. Your bad days will past and you will have good days. Make the most of them. Do not give in to the depression, find something positive and make go from there.
I know what a horrible disease this is and what it does to your body. I use to hate to look, but now I accept it all as being a part of me. This disease is not who I am, but what I have. Just hang in there and be strong.