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Mary B

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  1. Hi Joe2, Has anything improved your myositis? I too am feeling muscle fatigue in one arm that just came on suddenly. Recently noticed muscle atrophy in my calfs. I too was very fit and my leg muscles were my best attribute. It is crazy because I have not had any symptoms of scleroderma as I was recently diagnosed and coincidentally since I started taking Cellcept I started feeling all kinds of issues to my muscles (spasms & atrophy) and nerves. I just think it is odd that all these symptoms have came about shortly after my diagnosis and put on Cellcept.
  2. Thank you! I don't know if you are the founder of this site but I think it is very admirable of you to provide a forum for us to feel supported. it means a lot to me to at least release what I am feeling even if no-one responds. I was recently diagnosed and sometimes feel hopeless and alone and don't know who to turn to because no-one really understands how afraid I really feel. I am wondering if I need to be put on anxiety meds but don't want to mix drugs but feel really depressed lately since I have feeling some weird symptoms with this diagnosis. Thank you again!! :>
  3. Has any anyone experienced extreme crepey skin with systemic scleroderma? I know it effects your tissues and assuming it is effecting my collagen but I feel this is suddenly happening all over my arms and legs and looks awful. Is there a way to reverse or get rid of it? It is also making me lose muscle mass. Any treatment that could help this? It is pretty scary at the rate this is happening. Thanks!
  4. I am new to this site and newly diagnosed with Systemic Scleroderma. As probably everyone of you, I have a million questions. About 2 months ago I saw some excessive hair loss and decided to go to the dermatologist who then referred me to a rheumatologist based on my high ANA numbers, where I was confirmed with Systemic Scleroderma. My doctor ordered internal functional tests as well as an endoscopy since I have had GERD for many years. All tests came back good, GI doctor found intestinal metaplasia. He gave me pantoprazole and said to come back in a year for another endoscopy. Found a year to be too much time to wait to do another endoscopy so getting another opinion on that. My rheumatologist prescribed 500 mg CellCept (4 a day). Around this time I started feeling an unexplainable feeling almost like a tingling/tightening (sensitivity) on and off in parts in my face, forearm and thighs, it is also often itchy. I even wake up with my hands tingling. Strange that I was JUST diagnosed and I am feeling weird things already. I was assuming it was the Cellcept so my doctor said to stop it for a week to see if it goes away but it didn't, so I started to take it again. I then thought it could have been side effects from the pantoprazole so I stopped taking that for a while as well but this feeling didn't go away. I even started feeling that my skin is looking crepe-like in my hands thighs and calfs with noticeable muscle loss (possibly muscle atrophy). I went to a neurologist and they will be doing some nerve testing next week. I have also had a sore throat since around the time diagnosed as well, with periodic burning sensation on my tongue and bumps on the side and back of my tongue. I live in Tampa Florida and there are really no Scleroderma specialists here, so I made an appointment at Mayo Clinic for next week; hopefully I can get some real answers and even a second opinion on this disease as I know these auto immune diseases can often be misdiagnosed. I am wondering has anyone else had any of these symptoms, if so, would love to learn more about them. I am not sure if this is related to medications or truly symptoms of this disease. Thank you!!
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