Just wanting to check in, and let you all know my son's aldolase is down from 9.9 to 8.1 The Dr. says that's borderline normal. He is really encouraged by my...
Maybe I don't understand how this support group is suppose to work but I never get any answers, or support here or anyone to talk to me. Am I not doing this...
Hi... You mentioned that you aren't getting replies or support from your e-mails to this group. Actually, I think this is the first message I've seen from...
Hi! Annette again. I belong to the group that Cheri mentioned. I agree...we are a very nice group of people, and I think you'll get the support you need...
There hasn't been a lot of activity on the site the past few weeks. I hope that everyone is doing so well that they've been able to do other things. I had a...
We took Julia in for blood work last Saturday, and we just got the numbers back from her doctor today. All her numbers are normal, so we are taking the final...
CONGRATULATIONS TO JUILA, YOU AND JANIE ON THIS MILESTONE!!! I'm so glad to see that Julia is doing so well. My prayers are with you and your family. All our...
Thanks for sharing this wonderful news with us. It gives me hope that one day I too may be medicine-free. My prayers go out to Julia and your family. God...
Congratulations to Julia and your family! What a wonderful milestone. I pray that her numbers stay normal for the rest of her life. My son is at .5 mg of...
Hello, I just joined tonight, I am looking forward to meeting you all. I was DX with DM last July. Have had a tuff time with it but know it is all in Gods...
I would like to know if anyone has experienced arthritis, bone spurs and bulding discs with their DM. Also, has anyone ever had trouble swallowing and eating?...
Hi everyone, I'm new to this, so please bear with me. My daughter has not been officially diagnosed with jdms yet, but I am almost 100% sure this is what she...
Jill, My daughter is also three years old. She was diagnosed with JDMS in the middle of January. We figure that her symptoms go back to October 2001. Your...
Hi Kim, thanks so much for listening and telling me your story. Did your daughter have the loss of muscle in her arms? It just breaks my heart to know that...
Jill, I just read your posts on the support group. We just got back from Houston with my 2 year old daughter who has been diagnosed with JDMS. We have been...
Jill, Hi. My name is Susan and my son,Marcus, was diagnosed with JDMS in the spring of 2000. He began showing the muscle weakness, tired legs, and "wasting...
Dear Jill: Pardon me for being redundant, but I echo the sentiments of all the parents who have written to tell you about their guilty feelings. It is so...
Dear Jill: I too have to say that I would be redundant with my comments since the other parents have said most of what I also have to give to you as advise. My...
Since I haven't been on for a while, Roly was seen by the doctor yesterday. He has started to once again improve but still is having some difficulty opening...
Thank you everyone for all of the bits of advice. I know that we will get through this, and I want to show Elizabeth that we are strong for her. We have an...
In responce my name is Paul Fraser and the answer is Yes to all of the above If you would like to talk. email me. I was dx in 1995 at age 48 i am now 55....
Has anyone out there been pregnant while having DM? I am thinking about having another child (I have one child, age 4). My husband and I had just started...
Dear Jill: By your message I see you are in Miami. Me too. If I can be of any help locally, let me know. My son sees the Pediatric Rheumatologist at Miami...
Hi Marisa, We are actually in Michigan--We will be going to the University of Michigan Hospital. It would have been nice to have a local person nearby.....
My 13 year old daughter was diagnosed with dermatomyositis on March 14, 2002. She has been out of the hospital for a week now. I was told that she is the...
I was diagnosed with DM in Oct 2001. I have been reading many of your messages and can identify with many of the symptoms described. However, one condition...
... (and ... Hi Connie...I just read your message from Feb. I, too, had symptoms (red and swollen eyes, red cheeks, extreme fatigue, etc. etc.) but all tests...
... I was diagnosed in Aug, 2001. I had a great deal of hair loss. Prednisone can cause hair loss. Fortunately, although it is still shedding, it is shedding...
