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Elizabeth28

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About Elizabeth28

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  1. Dear Amanda, Truthfully, I have learned so much about this disease - and also gained so much respect and admiration for everyone on the boards - that even if I develop the disease, I have hope that life can still be lived, and my goals and dreams still achieved... For this I am very grateful. Elizabeth
  2. Greetings! It was just over one year ago that I first posted on the Sclero.org forums concerning my having been found to have positive ANA and Scl-70 (1.6 and then 1.3) levels. Since then, I have been overwhelmed by the kindness and generosity of fellow forum members, as well as non-members who were able to read my posting and respond by email. I've been interested to note how many Scl-70 positive forum members and online correspondents either have mild/minimal symptoms of a connective tissue disease, and have not been diagnosed with either limited or diffuse scleroderma, or have no s
  3. Thank you, everyone, for your responses. I haven't had any definitive experiences with Raynaud's yet - beyond obsessing over potential symptoms (I'm positive for ANA and scl-70 but haven't exhibited any signs/symptoms - knock wood!) - and have always wondered how you tell if you are experiencing it or not.... Your answers have been a huge help. It's interesting that I also have carpal tunnel that goes away when I stop typing. It's been this way for a couple of years - thanks to me hammering out a massive thesis and then writing like a fiend even after that. :-( I have to keep remindin
  4. Hi everyone, I've read a LOT about the symptoms for scleroderma, both diffuse and limited, the last year but remain a bit confused about Raynaud's. In particular, what are the main symptoms? Is it the same as the normal types of temperature change we experience in our hands when in warmer or colder rooms/climates? Does it always involve a colour change? Moreover, what distinguishes Raynaud's from 'regular' hand issues - e.g. mottled colouring, cool fingers, or fingers that are numb or tingly. Especially with regard to numb fingertips, I've got a mild case of RSI thanks to typing f
  5. Hi Jennifer! I wanted to write, welcome you to this wonderful board and add some words of reassurance. I, too, tested positive for ANA and scl-70 (1.6 on the first test in fall 2008, 1.3 on the second test in spring 2009) but, after two full check-ups with a rheumatologist who specializes in scleroderma, have been diagnosed as a false-positive. As with all potential health conditions, it's impossible to say where things will go in the future with my health, but my rheumatologist has urged me not too worry and to assume that I'll remain healthy. She estimates my chance at developing the dis
  6. Hi Nata, Yet another question, so I hope you don't mind? How long have you been running these low-grade fevers? Best wishes, Elizabeth
  7. Dear Nata, I wanted to add my welcomes, too! I'm in a similar position to you, having tested positive for ANA and scl-70 last autumn, one year after having been hospitalized for an anaphylactic reaction to antibiotics. (My auto-antibody results, in fact, surfaced as 'positive' only after the reaction!) I was seen by a rheumatologist who specializes in scleroderma early this year, and after careful testing she said I'm free of the disease, though they will watch me carefully with annual checkups. She estimated my chance of developing scleroderma is only 1%; I've seen variable estimates from
  8. Dear Sandra, Thank you so much for being there - as a friend - for me. It's also wonderful to connect with someone here in Canada. I'd been afraid, for what I've realized over the past year are 'unjustified' reasons, that I wouldn't have access to the best in scleroderma/rheumatology treatment here in Canada. As you know, we're saturated with U.S.-media here and are always told that care is better south of the border. And for some things, I'm sure it is. But we can't afford to underestimate how profoundly wonderful our system is, too, or that BC Medical supported at least the medical porti
  9. Hello, Your advice struck home for me; I am Scl-70 positive but asymptomatic. I still live in a kind of limbo regarding scleroderma though, and have realized that my mind-set is as important as anything else in terms of how I handle the ambiguity and fear. I've also become more aware of the importance of 'boundaries' in telling family members and friends what I am or am not willing to talk about. It's saved from many conversations that would have, I'm sure, only served to intensify my fear or anxiety. I'm also in Canada; was your trip to Johns Hopkins government-funded? Best wishes
  10. Hello everyone, I'm Rh- and have had multiple pregnancies, for which I always received one or two shots of Rhogam - which is an immunoglobulin intended to reduce Rhesus factor sensitivity between a Rh- mother and Rh+ infant. Has anyone else ever had one of these 'vaccines' and, if so, did their doctor advise that it's okay if you have, or at risk of developing, scleroderma? (I'm ANA and Scl-70 positive.) Thank you! Elizabeth
  11. Hello everyone! This is a purely *cosmetic* question, so I hope no one minds...! :D I've written before on this board, and shared my story. I'm ANA and scl-70 positive for the last year, although I was negative for ANA and all other auto-antibodies prior to an anaphylactic reaction to antibiotics in fall 2007. (I have had shown no clinical symptoms of scleroderma, and am under the care of a rheumatologist; I do realize I'm at-risk, however.) Prior to and following my anaphylactic reaction - but before I received ANA test results last year - I had received botox three times to treat f
  12. I've had two positive scl-70 tests - 5 months apart - in the last year and, like you, have no definitive clinical symptoms of anything. Odd migratory pains that come and go, no swelling or inflammation, no Raynaud's or GERD, etc. My rheumatologist estimates I have a 1% chance of developing scleroderma; my positive ANA and scl-70s only appeared after I nearly died of an allergic reaction to amoxicillin in fall 2007. So far, and knocking wood, I'm healthy! I've seen other postings on this site where people with far more symptoms, but no clear skin manifestation or Raynaud's/capillary looping
  13. Hello! Thank you for writing, and I do want to reassure you that simply having a positive ANA/scl-70 does not always mean you have a disease. I've had my own serious scares about this subject, and done a LOT of background research into the prevalence of auto-antibodies (ANA) and antigen-specific antibodies (e.g. scl-70) in different patient populations across Europe, North America, the Middle East and South-East Asia. There is sometimes incredible variation in the numbers of people who test positive for these auto-antibodies - even when research units use the same methods to determine the
  14. Hi everyone! First, I wanted to thank everyone for all their support, insights and information when I first posted about my current ANA/scl-70 positive, but symptom-free, status. It's been a huge help to me, and I feel so much better knowing I'm part of a community of people who have faced, or experienced, similar things and experiences! I'm in the midst of trying to decide whether my family and I should move overseas, to a third-world setting, for several years while I finish up my research. (I want to go very much! :) ) We are going to a country I have visited and lived in many time
  15. Hi everyone! I'm new to these boards, and have read many of your postings and blogs, many of which show not only your strength, individually and collectively, but your bravery in coping with new health situations on what may be a regular basis! I'm sure to learn many good things from everyone here. :-) Because I love to travel so often, and am often required to because of my work and family, both nationally and internationally, I wondered how many others travel regularly, and if they have experienced any difficulties traveling as a result of their health situation? Or, if you've had to
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