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About aniwallar

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    Senior Bronze Member

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  • Location
    Soeul, South Korea

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  1. Hi: Thanks to all for the replies. I am going to have to talk to the doctor about this. I don't understand why I have gained weight since I was diagnosed 5 years ago. I am still not overweight but I am on my way. Ani
  2. Hello to all: Last time I saw my Rheumatologist he told me about a medication called Gleevec. I was diagnosed with systemic sclerosis about 5 years ago. I was doing fine until last year my tests started to show some Pulmonary Hypertension and also Pulmonary Fibrosis. I have not started any treatment because I was moving from Korea to Romania. I will be going to Germany to see a Rheumatologist there and I wanted to know if anyone is taking Gleevec. I read somewhere that it does not help people with Systemic Sclerosis. Thanks for your help, Ani
  3. Hi: I was wondering if everyone with gastroparesis experience loss of weight. I have read about this condition because of all the belly problems I am having. I have all the symptoms except for the loss of weight. Anyone in similar situation? Ani
  4. Hi Warmheart: There is a great doctor at Boston University. His name is Dr. Merkel. Look him up. He only sees people with scleroderma and vasculitis. He also teaches other reummatholigist. I had a good experience with him but I moves across the world. Good luck, Ani
  5. Dear Evelyn You came to the right place. Everytime you have a questions or just want to vent you can write here. What country are you talking about. I know how hard it is to find help outside of the US, I live in South Korea. Try to stay warm and keep up with your appointments. Thinking of you, Ani
  6. Dear Yvonne: I have heard a lot about IV cyclophosphamide. Why were you prescribed that? How long do you have to have it? I wish you the best with this treatment. Stay warm, Ani
  7. Thanks so much for the replies. It is always scary when we get diagnosed with something else. It feels good to know that there are people out there with the same disease that hasn't progress. I hope I am one of those people. Some of you tell me about chemo for a year even thought the disease was diagnosed early. Is chemo and IV cyclophosphamide the same thing? Thanks again for being there, Ani Wallar
  8. Hi: I haven't post anything for a long time even though I try to get in this site often. One of the things I find so helpful is how there are always answers to our questions. You never feel alone in this site. So, I have another question.....I just had a CT scan last Friday. That same evening the doctor call me to tell me that it showed Interstitial Lung Disease. I know this is not a good thing, and my last doctor told me that ILD doesn't always have a good prognosis. I have been all over the internet trying to find info about it. The problem is that I only find what I don't want to read. Finally, yesterday I found a site that says that sometimes ILD doesn't progress in people with scleroderma. I need to know what I should expect in the future. I know it is different for everyone, but just in general. I also would like to know other people experiences with ILD. Thanks in advance for your replies. Ani P.S. How is peanut doing? I don't see her in here anymore.
  9. Thanks to all for your answers. I have an appointment with my primary care physician aug. 13 and I am going to ask her to give me a referal to see a gastro doctor. These symptoms are driving me crazy. I even think that it is worst than the daily pain. I will let you know what my doctor tells me. Thanka again, Ani
  10. Hi Christy: I know exactly what you are talking about. I have the same thing. My knees burn a lot and If I am seating for a while, it doesn't have to be too long, my legs burn and tingle. My toes also turn a little purple. I have told the doctor about this and I haven't gotten any response. Now, even if I am standing, I will have the tingling sensation on my legs and feet. I will ask my doctor again ans I will post whatever she answers. Ani
  11. Hi: I just have a question....For two or three months I have been having a lot of problems with my belly. I have been very bloated, so much that I look like I am four months pregnant. I thought I was... I am having many symptoms and I was reading about Colonic Inertia. It sure sounds like me. Can anyone tell me if scleroderma has anything to do with this? I don't like taking any kind of medication but this is something I would really like fixed. It would be nice to be able to button my pants again. Thanks for your answers, Ani
  12. Hi: I don 't think stress was the cause of my scledorema. I had just moved from Croacia to United States but, because of my husband's job, my family is used to the moving and we even like it. I noticed one summer after coming back from a boat trip that my hands were getting purple. I thought it was just bad blood circulation so I decided to see a doctor. For me it was easy to get the diagnosis. That was over 4 years ago. A month after my diagnosis , I felt my breast getting hard. I have breast implants so I went back to my doctor so he could look at them. One of my implants had ruptured. It was silicone so I think that probably that is what trigger my condition, even though the doctors say that it is impossible. Best wishes to all, Ani by the way, i finally quit smoking. So far it has been 8 weeks, cold turkey.
  13. Hi Barbara: I have experience the same thing more than a couple of times. I was worried about it being the heart. I had the 24 hour heart monitor done twice and nothing shows. I don't have any symptoms with the monitor, just a little heart racing sometimes. Well, I tell my doctor to explain why this happens to me and they tell me that it could be anxiety. I don't know what to think about this because, when this happens, I don't fell anxious at all. It just happens!!! Add to that the sharp pain on the left side of my chest (they say is gas) and the numbness of my left arm. I guess what I want to tell you is that even though your test may come normal, you have to insist to your doctor and tell him everytime you have one of this episodes. Ani
  14. Hi Yaya: What made you decide to participate in that trial? What made you a candidate for it? I just saw my doctor and he mention the trial and he felt somewhat excited about this medication. I just know nothing about it. Could you elavorate? Thanks, Ani
  15. I love Shelley's motivation. I'm going to have one fpr myself. Really, I'm going to try harder this time. I have been complainning about shortness of breath to my doctor and they think it's my smoking. Somehow I don't think it is only the cigarrettes. I need to show them that they need to look more into my lungs to find out what is going on. Ani
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