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Ana P

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  1. I have not yet been diagnosed with limited systemic sclerosis. I have positive ANA centromere pattern and diagnosis of gastropareris. My esophagus seems to be giving me more and more problems every day. Despite that my blood pressure is fine, my heart rate is consistently elevated. It is always above 100. It has reached 120. I also feel very fatigued and dizzy. I have a strange cough that comes and goes. I’ve been having that cough for about 3 years. I thought it was allergies. I’m wondering if this is a sign of pulmonary hypertension or lung fibrosis. I had a chest x ray about a year ago and echocardiogram as a pre op procedure. No one mentioned any irregularities. Does anyone have similar experience or know what tests are conducted to diagnose these conditions? I have an appointment with cardiologist in 3 days. I was also wondering if I need to see a pulmonologist or if a cardiologist can screen for both these conditions. I’ve been to so many doctors. It's wearing me down and I feel I that all doors have been closed. I have sent my records to scleroderma specialists in Houston. It’s been 2 months and I have received no response. I feel I don’t have enough symptoms to be diagnosed, but at the same time I am not any better and my future seems so uncertain.
  2. Thank you Margaret. May your son continue to experience relief. Best wishes for you both.
  3. Dimarzio, glad to hear that your digestive problems have improved. I understand completely. I feel that people think I need psychiatric help. I must admit that now I am anxious and perhaps some sort of therapy might help, but my symptoms are real and not made up. I am not a hypochondriac and I don’t get a kick out of going from doctor to doctor. Actually going to the doctor is something I have never enjoyed. People including doctors don’t seem to understand. May your other symptoms improve too. Best of luck!
  4. Kamlesh, it has to be so difficult to suffer from neuropathy on a daily basis. I’m so sorry you have to go through this. I don’t have pain, but my legs feel heavy and numb. Sometimes I get a vague tingly feeling in the ankles and knees. Have you experienced this? You also stated that your problems are internal. It seems that the two rheumatologist I’ve been to are looking for CREST signs. I only have the esophageal issues and gastroparesis plus centromere antibodies, but this seems not to be sufficient for a diagnosis. If you don’t mind me asking, what criteria did they use to diagnose you? Do you have sine scleroderma? I’ve asked about it and the doctors have dismissed by telling me it is extremely rare. Did you see a scleroderma specialist? Sorry for all the questions. I’m just trying to look for guidance on how to proceed with doctors.
  5. Thank you Margaret and Kamlesh. It saddens me to hear of the struggles so many of you are going through with this disease. I really admire all of you. Right now I feel in limbo. I have no diagnosis, yet I feel terrible. Eating is a source of anxiety . I’m scared of what the future will bring. I fear not being able to work again and not having health insurance. I am depressed too. I am going to a third rheumatologist this upcoming week. I’m trying to see a scleroderma specialist, and have faxed my records, but I’m not even sure if they will take me. So far I haven’t received a response. Many blessings to you.
  6. Thank you Margaret. Many blessings to you and your son. Glad to hear that his treatment is bringing him relief.
  7. Thank you very much for your response. Have a beautiful day.
  8. Does anyone know about or have experience with titer levels decreasing? Is this relevant to disease progression?
  9. I have had two positive ANA tests with centromere pattern. My only symptoms are gastrointestinal. I have gastroparesis and GERD. No skin manifestation nor positive results for other autoimmune diseases. I have been to two rheumatologists. They both have told me that based on my symptoms, they can’t diagnose me with limited systemic sclerosis. I inquired about sine scleroderma and got the response that it is very rare. I’m wondering what criteria was used to diagnose you.
  10. I’ve had 2 ANA test come out positive for centromere pattern associated with limited systemic sclerosis. My problems are mainly gastrointestinal. Bloating, gases, slow digestion and abdominal pain. I feel pressure inside my stomach and abdomen. I also feel stiffness in neck and back. Rheumatologist has not diagnosed me due to no CREST signs. Never have seen signs of Raynaud's. I am very concerned. I know this disease can manifest itself differently in people. Can anyone who is suffering from this condition and is having gastrointestinal issues give me some insight regarding symptoms?
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