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About Tonya-Georgia

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  1. Hi everyone, Here is a guy in Texas that is a scleroderma specialist that says that scl-70 is specific for scleroderma, BUT there have been some case where it turned out different. I printed this out from pubmed, and read the area about scl-70. I think it is 2nd and 3rd page that you need to read. It is interesting where it says below. The clinical relevance of autoantibodies in scleroderma Link: http://www.pubmedcentral.nih.gov/articlere...gi?artid=165038 Repeated testing for anti-Scl-70 antibodies is unlikely to be useful in clinical practice; although several recent studies have examined serial determinations of anti-Scl-70 antibodies in patients with SSc, a clear role for this in patient care has not been established. Patients who are initially positive tend to remain so over time [45,68], although in one recent study some patients with milder disease became anti-Scl-70-negative later in their disease course [69]. Three studies have shown variations in anti-Scl-70 levels (determined by ELISA) with extent of disease involvement and even seronegative conversion with disease remission [68-70], although this was not seen in others [51]. This is just one of the positive parts about having scl-70. I have not read anything that give just a little information talking about the degree of disease. It can be mild or go in remission. I thought this was interesting. The link is above. Tonya
  2. Hi, Do you remember how much your total cost was to see the specialist? I would just like to be prepared. Was it $1000, $5000 ect? I had a hard time getting insurance this last time because of the scl-70 positive. Thank you, Tonya
  3. Hi, I have had a positive Ana and Scl-70 two years ago. No skin involvement. No diagnosis? I am going to my 3rd and 4th rheumatologist this next month. The only symptoms so far I have been a little diarrhea occasionally and tiredness. I have tested negative for the Scl-70 4 more times which people says does not mean much. It is interesting that the Scl-70 is specific for diffuse scleroderma, but they cannot diagnose you on it alone. WHY? Does anyone know? My platelets do drop just a tad some times right below the 150,000 mark, but not much. So far all the doctors say I look great, but I feel awful sometimes. Having had a positive for Scl-70 really makes me nervous, but it seems most doctors do not know much about it. Tonya
  4. Hi, I was having stomach issues too for a while and my doctor just keeps telling me it is IBS. Anyway, I took just 20 mg of doxacycline Hyclate for 30 days, but I started feeling better the first few days on it. All diahrea and pain went away. Just something to look at. Tonya
  5. Hi, I am 37, and have a Scl-70, slightly low C-3 complement, and have stomach issues sometimes. I have no skin changes or diagnosis yet. I have had 2 positives Scl-70 about two years ago and since then 4 negatives for Scl-70. Which I have read it does not matter. I do have many autoimmune diseases in my family like diabetes, and other mild ones. My calcium was low awhile back, but I have not had it checked lately. I am not sure if this helps you, but I have read that taking vitamin D with a meal can cause problems with the body's uptake. Hope this helps. Tonya
  6. Hi Elizabeth, Thank you for the post. I need to hear that because everything you read gives you poor prognosis. I posted on Thursday that I had gone to the Any Lab Test place and had them run another Scl-70 just to make me feel better emotionally. I have read this not a good tool to use or should not be. Anyway, it made me feel better. I had my 4th negative over a 2 year period, however, my c-3 complement is at 83 normal being 90. I also ran a thyroid panel and was good. Okay, I am on the way back up from my low. I have always taken care of patients and been able to make things better for others. It has been so hard for me to be a patient. Also, I have always been in control of what I eat, how much I exercise, and just doing the right thing. However, I am learning there are things that you can't control. It is just ironic that I have controlled my environment, but can't control my body's genetics. I am not sure if I said that right because I am not really good with words. I am glad I have found this place and wish I had only done this a year sooner. I will only keep hoping that there will be a cure or a miracle will come. I kept looking at this board, but would never post. Thank you, Tonya
  7. Hi Patty, How long have you been positive and no symptoms? If looks like you joined in 06. I had a positive in 07, and negatives since, but I had a weak moment the other day. I went to any lab test and ran scl-70, c-3 complement, and thyroid panel because I wanted to check. I just feel tired which is starting to make me wonder. I am 37 and had to do fertility drugs to get pregnant, and I wonder if this did not send me in to a spiral since I could not get pregnant. I took lots of hormones trying to get pregnant. Anyway, please tell me more about your scl-70 experience? Thank you, Tonya
  8. Hi David, Thank you for the referral. Did you do a drug study at Duke? Any information is appreciated. Thank you, Tonya
  9. Thank you Janey. Referrals are always better. Tonya
  10. Hi, I am collecting as much information as possible. Thank you for the referral. I see my primary doctor on Tuesday that can make the referral. Thank you, Tonya
  11. I live in Georgia and need a referral personally to the best scleroderma specialist. I will drive or fly to get there. Who is the top guy? Does anyone know? I have seen the referral list, but I want to know who has seen one of these guys. Are they good? Referrals are the best. I do not want a list. Has anyone seen the guy in Charleston SC? Has anyone seen the lady at Birmingham AL? Who is considered the best? Scl-70 positive 2 times and negative 3 times c-3 complement slightly low 30 extra cc of pericardial fluid. The heart doctor was my friend and would not have told me because it is not much if he were not my friend. He did not feel it was important. He also said it could have come from the football hitting me in the chest while I was playing flag football. However, my sternum does pop and crack when I lift weights. Just searching for answers and had a really hard week. I am a very positive person, but this has got me beat. Tonya
  12. Hi, What are the doctors telling you? I am searching for a scleroderma specialist and would like to go to someone that has seen everything. We do not have one here in Ga. Does anyone know of a great sclero specialist. I have seen this list, but I want names and experiences too. Referrals for a person is the best. Scl-70 positive and c-3 complement slightly low. Anyone please give a suggestion. Thank you, TonyainGa
  13. Hi, How low is your c3-complement? Mine is usually 6-10 points under what is normal. I think it has to do with how well your body fights off infections. Tonya
  14. Hi Everyone, I also got two positive scl-70 over the last two years and 3 negative scl-70. Undiagnosised???? Could this be prescleroderma? My rheumatologist says I do not have scleroderma. I do have weird symptoms sometimes and some fatigue. I have 5 year old twins that wear me out everyday. They sleep on me at night and I don't get enough sleep. I am also a health care worker. I have not been feeling great the past few weeks, so I started reading about diffused scleroderma AGAIN and got myself in the dumps. Yesterday after I dropped the kids off, I went to the Any Lab Test place and just to make me feel better I had them run the Scl-70, C-3 complement because mine is a few points low, and a thyroid panel. Two years ago they did find just 30 extra cc of fluid on the pericardium, but just because I went in freaking out about the first positive. I know I should not play my own doctor, but it is just frustrating that I have always took good care of myself, exercised, eat organic and great food. Now my body is beating it self up. It just does not make sense. I have NO control over my body. Okay, just have a weak moment and needed to vent. I could be worse off. Hope everyone is doing good today! TonyainGeorgia.
  15. HI, I also have a positive for Scl-70 and C-3 complement runs slightly low 74-84 with normal being 90- +. I have had 2 positive SCL-70 and 3 negative SCL-70 test after the positives. I have fatigue sometimes, and just weird little things that happen. A little pain that comes and goes in my back area all over. Everything internally has been looked at. Nothing wrong. All other labs are good. Occasionally in the past when I am run down my platelets have dropped below the 150,000 mark. I am 37 years old and the mother of Twins that are now 5 years old. I get just a little cold and my hands will turn splochy with White and Red. I am not sure if it is Raynands, but my hands are never blue. I am going to my third rheumatologist Sept 2nd, and my third rheumatologist in Oct at Emory. No clinical symtoms. My friend that is a cardiologist did find just a little extra fluid on my periocardium 30cc extra. I have 90 cc and normal is 60cc. Does anyone else have a positive scl-70 and how long? I am find that the doctors don't understand Scleroderma. Tonya
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