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eah

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About eah

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  1. Has any one ever been diagnosed with Left Ventricular Diastolic Dysfunction with Sclero? If so, can this lead to pulmonary hypertension?
  2. eah

    questions

    Hi Grace, I am sorry you have been thru so much. The symptoms you have are seen in scleroderma and other autoimmune diseases. I will bet that a majority of the people on this board have had similiar experiences with medical personnel regarding their illnesses. I think these symptoms over lap so many disease that often times, doctors are afraid to label people with a disease. A lot of autoimmune diseases are seen in families. My family history is strong for arthritis, celiac disease, crohns, colitis, dermatomyositis, fibromyalgia and chiari 1 malformation. I had three pregnancies and all of my children have some sort of autoimmune disease. I would highly recommend a sclero specialist at a major teaching hospital. Not all rheumatologists specialize in scleroderma. I wish you all the best. Please feel free to contact me privately with any questions. EAH
  3. In addition to the Lyrica, I was also on Plaquenil. I also recently started Immuran. They tried methotrexate, but I didn't tolerate that well. My liver enzymes are rising on Immuran so I had to cut it in half. I will see how that works. I hope this helps. Good luck. EAH
  4. Summer, I am sorry that you are going through all those digestive problems. I have had very similiar experiences over the last few years. I lost a ton of weight. I had horrible reflux and diarrhea. I was hospitalized at one point because I couldn't keep anything in me. They did a ton of tests (gastro) and found basically nothing to explain what was going on. Ironically, I started on Lyrica for pain and it didn't eliminate the problems, but it helped slow them down. I then found out later that I had severe small fiber neuropathy (due to sjrogrens) and the neurologist felt it was affecting my entire body. The gastro put me a very low dose of elavil and that along with the lyrica helped reduce my problems significantly. I wish you all the best. EAH
  5. Colored drinks (such as red or blue) can cause color changes in your stool. Try not drinking the blue drink for a few days and see what happens. I would also recommend you check with your doctor to be sure there is nothing else going on. I wish you the best.
  6. I have the same symptoms along with CREST, Raynaud's and Sjogren's. After many negative tests, I was tested by a neurologist and was diagnosed with severe non length dependent small fiber neuropathy. This does not show on an emg. It is also worse in the cold weather. It also is worse towards evening and when I am sick. I now have severe numbness and tingling in my lower and upper legs and in my hands and arms. I also have numbness in my mouth, tongue, jaw and face. I was told it was secondary to Sjogrens. The neurologist is the way to go. If an emg does not show anything, see if they will do a skin biopsy for small fiber neuropathy. Hopefully you will find some answers. It is not unusual for us to want answers to our symptoms even if the answers are not what we would normally want. I wish you all the best.
  7. I also have neuropathy in both my feet/legs/hands/face. I was told it was probably caused by sjogrens secondary to scleroderma. I do have pain from it that progressively gets worse as the day goes on. It is much worse in cold weather. EAH
  8. Sorry your having such problems. I am not at all familiar with the procedures you spoke about. I have heard that there is an electrical implant that can help. It is not FDA approved in the US yet. Has your doctor tried any drug interventions? I have heard that low dose anti depressants like elavil sometimes help. I wish you all the best with your decision.
  9. I have been diagnosed with sine scleroderma since 2002. I believe I have had symptoms since 1985. I have had three succesful pregrancies in the 1990's. I felt extremely well during all pregnancies. In fact, I felt better while pregnant than when I wasn't pregnant. All pregnancies were all 2-3 wks early. I did feel worse after all my pregnancies, but was able to function fine. Everyone is different, so I would consult with your rheumatologist and ob doctor. My symptoms did progress since that time, but I still work full time and I am able to take care of my kids. Good luck with whatever you and your doctors decide is best for you.
  10. Annie, I have burning, numbness, pins/needles feelings. Try a neurologist. My turned out to be small fiber neuropathy that affected not only legs/arms, but my autonomic nervous system. They think it was from sjogrens secondary to scleroderma. It was detected by skin biopsy not an emg. I hope this helps.
  11. Please try not to be embarrassed. I had this problem for a few years. I lost a lot of weight. I was hospitalized for uncontrollable diarrhea. I was put on antibiotics for supposed bacterial overgrowth. I was later tested for nerve problems. They eventually put me on a low dose of elavil, lryrica and lomotil. It was due to sjrogens from the scleroderma that I got the nerve problems. Everyone is different and responds differently to medications. I do hope your feeling better soon and that you find something to bring you some relief. I know that it is not easy. Please feel free to e-mail me personally if you need to talk.
  12. eah

    Imuran

    Has anyone tried Imuran for sclero? I have sine scleroderma with sicca symptoms and nerve damage. I tried methotrexate and IVIG and no improvement. eah
  13. Lynda, I have same pain as peggy. Severe pain in legs feet arms and hands. It is worse at night. I have sclero and was also diag w severe small fiber autonomic neuropathy. I tried methotrexate and pain was worse.see what your doctor thinks. Take care. Eah
  14. Jene, Please try not to stress. Reading your post reminded me a lot of my first years with this illness. I was around 19 to 20 when symptoms came. Most of my health problems started after I had kids. I didn't get a diagnosis until my thirties. I had a dilated esophagus on x-ray, positive blood work, problems with my wrists (similar to carpal tunnel), I had really horrible fatigue and was diagnosed with asthma I didn't know I had, I had trouble swallowing, acid reflux, mild Raynaud's. I don't have any skin problems as I have sine scleroderma. Please try to see a specialist in scleroderma. If you are close to the Ohio border, try the Cleveland Clinic. Dr. Chatterjee is a scleroderma specialist there. Ask to be put on a cancellation list for any hospital/doctor you schedule an appointment with. Call the office/scheduler in the morning and ask if they have any cancellations. You might be able to get in sooner than August. However, if you don't, please don't worry. Most of these symptoms can be managed with medications. It is an inconvenience, but I still manage. Most people are okay for many many years. The internet can be a scary place as it usually describes the worst case scenarios. It might be that you don't have scleroderma. Only someone who specializes in scleroderma can tell you for sure. Look for support groups near your home. Talking with someone can help. Please feel free to e-mail me privately, if you need to talk. Take care. EAH
  15. I had it done a few times. The test for me was uncomfortable. However, the results always came back normal even though I had severe numbness, tingling and pain. After several different doctors, a neurologist did a skin biopsy and I had small fiber neuropathy, which usually does not show up on an emg. So if you results come back ok and you are still having problems, ask about small fiber neuropathy. EH
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