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Jemnibabe

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About Jemnibabe

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  1. Hello everyone. I am new here but everyone seems so friendly and helpful. I am hoping someone can help with my problem. I have tightening skin, collagen thickening and hardening and my thighs and calves and even up my back somewhat, are becoming so stiff that it's difficult to walk far without extreme back pain. Does anyone have this problem or are you aware of any type of treatments to perhaps soften the collagen and give me back some flexibility? Stretches are almost all I can do in the form of exercise. I would be so grateful for any help or even ideas as this is beginning to really affect my mobility. Hope everyone is having a pleasant and peaceful evening. Judy
  2. Thanks Heidi, for such a warm welcome. I love this forum and have already gained much information as well as hope and faith from the different posts. I am very interested in finding other people that have had a problem with tight skin, collagen-thickening and hardening, causing a loss of motion. I also have a lot of hair loss, presumably due to the collagen-thickening. Hair loss not only on my head but on my legs and underarms, which I guess could be considered a good thing. LOL Have you discovered any safe treatments to stop the thickening or at least, soften it and slow it down? Thanks for your warm welcome and anyone who can give me any advise or hope for this collagen problem will be much appreciated. Have a good day. Judy
  3. 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.
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