Hello everyone. I have been reading posts on the old forum for weeks now and have been trying to keep up on this lovely new forum. The title of this thread is similar to some questions/comments I wanted to share so here goes. I have had tight/hard thighs for 6 or 7 years, gradually getting harder and progressing down my legs and up my back. Had an EMG and was told it definitely is not muscle or nerve-related. So began my search for some answers. My primary care physician sent me to every type of doctor in vain and she was totally baffled. A gentleman at work had Scleroderma and he seemed to have many of the same symptoms as I did so I began my research into Scleroderma. After waiting several weeks for an appt. with a very good dermatologist. doc, I went to my appt. and she was also baffled but felt something was definitely going on under my skin. She attempted and was successful in getting me admitted to "Grand Rounds" at Johns Hopkins, (right here in my city) and after being evaluated by about 40 doctors and students the almost positive consensus was that I have SCLEREDEMA.........not to be confused with SCLERODERMA. Apparently it is somewhat related to Scleroderma but only/mostly in the problem with mucin deposits and extra collagen thickening and hardening under the skin. I don't fit perfectly into that diagnosis either but I am scheduled to get a skin biopsy soon which should totally confirm it. There is very little info on line concerning Scleredema but it is another autoimmune disease caused normally from Diabetes, which I have as well as Thyroid disease. Yes, I too, am a mess. LOL
Question is, has anyone here had any experience with this similar, but different disease? I also felt my experiences with coming up with a diagnosis might just help someone else who is experiencing the tight, hardened skin but not a lot of other symptoms of Sclero. I do have slight Raynauds and other similar symptoms of Sclero myself but the JH doctors all felt very sure I fit into a seperate category of CTD.
I hope it is all right with everyone if I hang out in this forum a bit and share some of my experiences with everyone. There is so little information on Scleredema and certainly no forums for me to be involved with.
I hope everyone is having a pleasant day and I really love this new forum.