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Seton

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About Seton

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  1. Shelley, Sheryl and Amanda, Thanks so much for all the help and information. I do feel like this pain is related to Scleroderma and I will call the doctor after the holidays. I am still a little in denial and hate to be a nuisance. Although I agree some problems are easier to deal with , if we tackle them from the beginning. I will keep you posted:) Seton
  2. Sheryl, Thanks I think that is the post I reviewed earlier. I can’t tell what is going on but something has changed I have pain all along my shins. I can’t tell whether it is nerve or skin pain. It hurts constantly. I don’t think it is shin splints because I have had them before and the pain feels different. I was just wondering if this sounds familiar to anyone. I will be heading back to the doctor at the end of January, hopefully I can hang tight. Thanks you for your help, I always feel better asking question here Happy New Year’s, Seton
  3. Question? I know I was reading about painful skin before, I can’t seem to find it,any help would greatly be appreciated. My skin below my knees is very painful almost feels like a bad sunburn. Is this related to Scleroderma? Best wishes in the New Year, Seton
  4. Seton

    TB test

    Turns out I must have been exposed to the TB virus....big bummer. I went to see an infectious disease doctor at Union Memorial, Dr. Edar. He recommends I start taking the antibiotic called isoniazid (INH) for the recommended nine months. Along with that I take Vitamin B6, to avoid liver damage side effects. So far so good, I thought I would get sick on the stomach, but have not experienced any side effects in the two weeks I have been on the medication.Hopefully I will continue to be fine, with age the risk for hepatitis increases. Thanks for your post, Seton
  5. Seton

    TB test

    Dusty, You are right, I called an infectious disease doctor he could not see me until holiday unless my doctor called him with a request. Anyway both doctors talked and they are in agreement I will need INH therapy. I will meet with the new doctor and make my final decision soon. Thanks for your help…I am scared I am not sure how the medicine will affect my daily life. Once I start he said I will have to be committed for six months and I could get hepatitis but as soon as the medicine stopped that would go away. Do you know anyone who has had this type of therapy? I would love to ask them questions. Thanks for all your help, Seton
  6. Seton

    TB test

    Mary in Texas, You information is consistent with what the doctors are telling me. I went to the general practitioner yesterday and he was surprised my Rheumatologist pushed this issue back to him. He suggested that I call the Scleroderma Clinic at Hopkins and ask if Scleroderma can cause a false positive to TB. If the answer is No he is suggested that I ask them another question. He wanted to know if INH therapy (treatment for TB) would be effective in patients greater than one year exposed. If yes he suggests I start therapy, honestly, I am just frozen with massive information swimming around my brain. I am dragging my feet, but then he painted a very clear picture of the alternative. He said imagine becoming active with TB, not only will you be in isolation for 8 weeks heavily medicated you will have already infected the ones you love…I know cheery thought! I am going to call Hopkins this week and I will keep you posted. One more thing he said if you have a false positive to TB DO NOT go on any immunosuppressant drugs , it can activate inactive TB. Thanks for all the help and support, Seton
  7. Seton

    TB test

    Jeannie, Thanks! I needed that kick in the pants. I am going to call today....I will keep you posted. I am not a doctor but in hindsight I should have had the blood test, not the TB shot. I feel like my symptoms have become multiplied since I have received the test. Hopefully, I can spare someone else this aggravation. Lots of hugs, Seton
  8. Seton

    TB test

    Jeannie, I am still not in the Scleroderma groove. I guess denial is a powerful unuseful tool. I called the rheumatologist, not knowing who to call, and she said I would need to call my general practitioner and go from there. She said the protocol has changed; they used to treat at 35 (whatever that means) but they may want to treat me for the inactive bacteria to avoid my immune system from further decline throwing me into active TB. Do you know anything about compromised immune systems and inactive TB? Sadly I have never told my general practitioner my diagnoses; I have not had to yet. After reading many stories here, I am concerned he may not be familiar with scleroderma. Thanks for all the help, I always feel comfortable here. I will keep you posted! Seton
  9. Seton

    TB test

    Thanks so much for all the help. I am so thankful for this group because I always feel heard and understood and there is no amount of medicine for that peace of mind. My chest x-ray came back clear. It turns out I have latent TB, which is inactive TB that could become active if the immune system is further compromised. I am going to take your advice and call my doctor and now see how to proceed. Thanks again for all the help:) Seton
  10. I just got a TB test last week, felt sick immediately after. The results came back positive, not symptomatic. Went for a chest X-ray immediately, won’t get the results back until Monday. I feel like I am having a reaction to the test. Could this be possible? Does anyone have experience with the TB test and Scleroderma? I am kicking myself; I should have done my homework first!!!!! Thanks for your help, Seton
  11. Hi All, I have been feeling dizzy for quite some time now, when I go from a horizontal position to standing. But lately, I feel like I am going to pass out all together. Is this a symptom of Scleroderma or possibly Antiphosphilid Syndrome? Thanks for your help :) Seton
  12. Sam, I am new to the Scleroderma diagnosis. But I was diagnosed with Antiphospholipid Syndrome (APS) six months ago. I find your question interesting. I have been having the same numbness and tingling at night and I was writing it off to the APS. APS can have multiple sclerosis (MS) like symptoms so I thought I was dropping things and getting clumsy due to that diagnosis. Thanks for your post, everyone has given me lots of food for thought. One day at a time, Seton
  13. Hi Jeanie, I am new to the site and new to the diagnosis of Limited Sclero. I was diagnosed with APS six months prior as well. For someone who has not has much time to digest all this information, at first your post was a little unsettling. After reading all the other post on this topic, I am thankful to know I am not alone. It sounds like a positive attitude and a great sense of humor is what it is going to take to see me through. To answer your original question, I have six kids ranging from 22 to 7, my biggest fear is that I won't be able to take care of the seven and ten year old like I did the other kids. I have NO energy, I feel guilty that I just can't keep up the pace. Thanks for your post it gave me much encouragement. Take Care, Seton
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