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Old 09-23-2007, 01:24 PM   #1
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garethsgirl HB User
feeling alone with DM

Would love to talk to people who have been diagnosed with DM. Family and friends are very supportive but it would be nice to share experiences with people who understand the uncertainty and the lows that go with the illness.

 
Old 10-20-2007, 08:46 PM   #2
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sidney123 HB User
Re: feeling alone with DM

Quote:
Originally Posted by garethsgirl View Post
Would love to talk to people who have been diagnosed with DM. Family and friends are very supportive but it would be nice to share experiences with people who understand the uncertainty and the lows that go with the illness.
I have been recently diagnosed with DM. I would love to talk with you about the diaease and share experiences.

Last edited by sidney123; 10-20-2007 at 09:20 PM.

 
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Old 10-23-2007, 04:45 AM   #3
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Re: feeling alone with DM

was diagnosed about a year ago with the skin problems. Have recently developed muscle problems too. Being in the UK I guess treatment is slightly different. Have been on prednisolone twice and azathioprine once. Have also tried plaquenil .Have had various side effects from all the treatments, I am currently taking no medication at all and I am waiting to see the neurologist again . Find that I am very tired all the time and that I suffer from depression quite a lot . My muscle enzime tests keep coming back ok - I feel that my dermatologist is not taking my symptoms seriously but the more I read the more I discover that the tests are not always conclusive. Find my family is very supportive but I feel a lot of guilt for being such a burden to them .

 
Old 10-26-2007, 09:23 AM   #4
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Re: feeling alone with DM

got sick 3 years ago, and has taken that long to be diagnosed. been unable to work since getting sick. a year ago had to give up my apartment and move in with a friend. most don't understand what's going on, hard to explain especially if they don't see first hand when having attacks. know a lot about depression, am on welbutrin and see a psychologist once a week. helps to talk to an impartial person. been through a ton of tests, including a spinal tap, most of which have come back negative. took all those tests, plus a rheumatologist who has done research in myositis to get diagnosed. would suggest that you look for a rheumatologist, preferably one who has a background in myositis. keep looking until you find a doctor who knows what he is doing. because it took so long to get diagnosed and treated, my lungs and heart have been effected. see not only the psych, but a primary care physician, rheumatologist, ENT, cardiologist, and a neurologist. the last two mostly just monitor. have been through a lot of the medications, none of which have worked. now doctor is suggesting infusions (iv drugs). big step, all the side effects. these drugs are so toxic, depressing the immune system. still don't know if i am going to start the infusions. still researching. don't just accept one doctors opinion, make sure you are getting the best treatment possible. good luck, feel better.

 
Old 10-28-2007, 12:52 PM   #5
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Smile Re: feeling alone with DM

Thank you for your reply . Although things are tough , it does help that there is someone else who knows what this is illness is all about . I see my doctor again at the end of the month and I hope to get some answers as to where I go from here . Take care of yourself and thank you again for your support.

 
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