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Found 2 results

  1. Hello, I was diagnosed with localized morphea in 2014. I was initially diagnosed by a dermatologist, and given a topical steroid cream. She did not seem the least bit concerned, not taking any photos or scheduling follow up appointments. Knowing nothing about the disease, I simply mirrored the same low-level of concern. Two years passed and my condition worsened. Lesions spread all down my thigh, my calve, and wrapping around to the backside of my leg. Growing concerned, I decided to see a dermatology specialist in Philadelphia. I told her about the progression, showing pictures I documented on my own. I also explained I was having extreme muscle spasms in my leg in which I have the lesions. My doctor said there is no link between the two. She prescribed me plaquenil, to which we learned after 3 months of taking the drug, my body was not responding. At that point we decided to try methotrexate. I had a hard time with the drug, and requested to be taken off of it my next visit. I work in the pharmaceutical industry, so I completely understand the necessity for pharmaceuticals. When I asked to be taken off of the drug, my doctor was flabbergasted. She explained that we finally found something that worked -- why would I want to be taken off and back track? My concern is that we are not getting to the root of the problem. I don't want the lesions to simply stop spreading, I want to understand how it's happening. Furthermore, I am very familiar with methotrexate from working in the pharmaceutical industry, and the aggressive nature of the drug that has potential to cause liver damage. I am 25 and concerned. My leg spasms are at its worst, at some points so aggressive that they are awaking me from deep sleep. I feel alienated by my doctor. I have thrown around the idea of seeing a younger rheumatologist that may be more open to exploring other treatments. Additionally, I am interested in participating in clinical trials. Does anyone know how I would go about that? Thank you for your support and knowledge on this subject. Kara
  2. I'm a 25 year old female. About 3 years ago, I began to develop scar tissue on my abdomen. It showed up in the shape of a pair of lips (funny)! The next one showed up on my breast, when it covered 1/3 I finally went to the doctor. They prescribed many fungus creams, to no avail, and finally did a skin biopsy of my breast. I was told it was scleroderma. I finally went to a specialist about a year ago. My opinion of the guy is not high. He didn't run ANY tests... and I have bad teeth, always have, he asked if I've ever done meth, when I responded that I haven't, he says, "Are you sure? You know, meth can do that to your teeth."......?!? Not impressed. He said I just have morphea and don't have to worry about ever getting tested again. So, fast forward to the present, the past three weeks my eyes have become extremely sensitive to sunlight, I have to wear sunglasses until the sun goes down or else I'm squinting heavily. My joints have cracked EXCESSIVELY for probably 3 years but especially lately have become increasingly painful. I have frequent muscle spasms, especially under my rib cage (no, not pregnant. lol). I googled the symptoms tonight and found that they are very common in people with progressive systemic sclerosis (or diffuse form). I'm a single mom with a mortgage...I don't have much money right now, going through a rough patch. I'm worried that my condition is not just morphea.... What do you think, should I be worried?
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