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.