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Janet A

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  1. Dear Joelf, it sounds like that is the way to go. Thank you kindly.
  2. Shelley, I do appreciate the info. You are right; I am distressed and depressed. I keep thinking that there might be something they could do about my extreme fatigue, sensitivity to cold, many GI problems that I have and did not seem to respond to meds for my GI symptoms, except one to certain extent, that is. I must admit, certain symptoms scare me and I would get a panic attack on top of that. For example, when what I eat feels stuck on my esophagus, or not being able to take steps due to extreme abdominal pain or extreme fatigue, etc. I am scared that these symptoms won’t
  3. Which one of the Scleroderma clinics in the list (in the US) would be particularly interested or good in cases with Gastrointestinal involvements? I would appreciate a specific clinic or a well known doctor in this particular area. Would you be able to help me? Kind regards, Janet
  4. Hello everyone, I tried to see a new Gastroenterologist for second opinion regarding my worsening symptoms. My general practitioner had written a referral and had faxed it to him. I was told by his office manager that he was not going to see me. There is nothing he could do for me!! I am in state of shock. He refused to see me outright. I really feel I need to get out of Australia and get an opinion from a gastroenterologist with some experience with Scleroderma patients and the symptoms or at least someone who is prepared to listen. It might not be scleroderma, might
  5. Hello friends, I’m thinking of contacting a Scleroderma clinic in the US with a Gastroentrologist who has a good knowledge and experience with Scleroderma patients. While going through the info links I found in ISN, I am thinking of contacting Prof. Michael Brown in Rush University medical centre. I think I need to get in touch with the clinic and the Gastroentrologist before travelling to the US, so I know where I am going and I might even be able to get some of the tests done in Australia where I have insurance. Is there any Scleroderma clinic or doctor
  6. Thanks Pamela and Dimarzio for sharing your experiences with me, I certainly appreciate it.
  7. Would you be able to give me any idea of what the medical cost would be in the US? Roughly? You guys have been through this, I thought you might be able to give me some idea of what would be involved, time wise and cost wise in the US? Thank you again for reading my post and responding to it. I whine and whinge and carry on, don’t I? Kind regards, Janet
  8. You took the time to read my post, kindly, understandingly replied and even looked for a specialist in Australia! So, so kind of you, Pamela and Margaret. Thank you. I had been reading a lot about GI involvement & Scleroderma. Your replies encouraged me to read more and watch a few presentations by doctors in the US. I’ve been thinking about contacting a specialist in the US or even travelling to the US and go to a reputable Scleroderma Clinic and look for proper diagnosis if there is one for me. First of all I don’t even know what the medical costs are going to b
  9. My sincere regards to you all, I am tired, in pain, and struggling. My story is very long and boring. Things went very wrong about 3 years ago. I became particularly ill after my hysterectomy which I thought was the cause of some of my problems. I started losing weight rapidly and developed a lot of Gastrointestinal symptoms. I started feeling the cold all the time and haven’t stopped since. I have a lot of abdominal pain and distension. I feel the food gets stuck in my oesophagus. I feel nauseous most of the time. Sometimes the abdominal pain is so great that even walking or sitti
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