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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 symptoms at all. Given that, after two head-to-toe rheumatological check-ups since January 2009, I continue to have no identifiable symptoms of scleroderma, I'm writing again to see if we can do a 'roll-call' of how many of us have positive Scl-70s and no symptoms or diagnosed disease? Perhaps we can also do a 'hands-up' of individuals who have tested positive for other auto-antibodies associated with scleroderma - such as ACA (anti-centromere) - but who have either no symptoms or have yet to be diagnosed? All best wishes to everyone, Elizabeth
  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 reminding myself to sit properly and be careful of how I use/position my hands when I'm typing or I run into problems. The numbness and tingling isn't associated with any change of temperature in my fingers or hands (e.g. they're cold), so I suspect it's nerve compression from the carpal tunnel. I've also heard that numbness can be from a B12 deficiency - has anyone else had problems with that?
  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 for 10+ hours per day AND my terrible posture! I'm not sure when RSI transitions to Raynaud-like symptoms, or, carpal tunnel. (Suppose I should keep the typing down to a dull roar!) Best wishes to all, Elizabeth
  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 disease as 1%; I've seen a number of published reports that suggest that in the absence of definitive symptoms for scleroderma, a positive scl-70 test by itself means you only have a 9% chance of actually having the disease. Testing for the ANA panel - which includes scl-70 - has become increasingly refined and more sensitive the last few years. As a result of increased sensitivity, however, specificity (e.g. the # of people who test positive and actually have the disease) has fallen. So, while more people with scl-70 are 'caught' by testing, less of those who test positive actually have scleroderma. I hope this makes sense! :-) I'm the mother of four children, and have had difficulties in the past with miscarriages. My rheumatologist has said she feels its highly unlikely my ANA/scl-70 status has played any role in this, especially because my two miscarriages occurred prior to me testing positive (I'd tested negative before having a massive allergic reaction to antibiotics in fall 2007). I hope you can take some time to search this website for other entries concerning pregnancy, as well as scl-70. You'll find a surprising number of people who have tested positive and are, like you and I, disease-free. Best wishes, Elizabeth
  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 published studies that put the risk anywhere from 3-9%, but these are odds I can live with. Higher than those faced by the general population, to be sure, but as my dear quirky husband keeps reminding me, my latest blood test results show I have a higher chance of a heart-attack in the next 10 years! (Ah, the joys of black humour!) I've found a wide number of studies showing the incidence of scl-70 in healthy populations. The numbers vary by country; there's obviously a genetic component of all of this, in addition to possible environmental factors. In the meantime, and probably like you are now, I'm having to re-evaluate how I think about my body, my life and how I handle stress, and also focus on the ways I am healthy today. Living in the present, and keeping things in perspective, is a crucial part of how we respond to the news we may develop scleroderma. As we all know, stress and anxiety can cause its own wide range of 'symptoms' - many of which you may notice pop up the moment you start worrying. I've taken up yoga when there's free time, meditation techniques (which have helped me so much) and have altered my diet. I found, in fact, that an anti-candida diet did wonders for my joint pain; a friend had suggested I try it after I was recovering from my hospitalization 2 years ago - in order to help remedy the side effects of prednisone - but it took me until this April to finally grit my teeth and do it! I'm glad I did now! My suggestion is that you search the forum messages for 'scl70' to see how many other people have posted on this - those with or without scleroderma - so you have a better sense of the spectrum of possibility. Having scl-70 is not necessarily a guarantee anything will happen to you, and it's important to focus on this too. And curtailing your need for more information on scleroderma is important especially while you're suffering so much anxiety. I went through this need for info last fall, too, but I found it made my emotional situation worse. I learned what I could, and then put it away and focused on what WAS, not what MIGHT be. It doesn't always work, and there are days I lapse into fear again, but it's far easier to work my way out of it now. It may also be worth looking at a recent posting showing pictures of telangiectasis - these are quite distinctive. I've got small red spots on my body, too, but have discovered that these aren't the same as telangiectasis. One less thing to worry about! This forum is a life-saver, so I'm glad you found everyone here! Best wishes, Elizabeth
  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 portion of your visit to Johns Hopkins. Hearing this gave me hope that, should I need it, I too would be able to count on the government to help me out. Does BC Medical cover your pharmaceuticals as well? I'm currently living in the Maritimes, and I know that each province is different about 'catastrophic' medical coverage for drugs. I'm healthy now, with no diagnosis yet, but I'm having to look ahead to whether or not I will need supplementary health insurance for the pharmaceuticals, should I ever need them (as I write this, I'm knocking wood I stay healthy!). My family is out west, though, so it may be worth thinking of returning to live there one day. Thank you again, Elizabeth
  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, Elizabeth
  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 frown lines. I loved the results and never had any adverse side effects. I'd like to use botox again, but have been unable to find any information online, or from my doctor, concerning the risks it may pose for people who are predisposed to, or diagnosed with, scleroderma. I've seen that botox has been used to treat Raynaud's before in scleroderma patients, and I've also seen that lupus foundations in the U.S. and U.K. have suggested there are no contraindications for the use of botox among lupus sufferers. I do know that botox is viewed, overall, as much safer than injectible fillers - which sound risky for all kinds of reasons! :unsure: I'd really appreciate your ideas, though, or if you can direct me to good resources where I can better study up on this? Thank you! Elizabeth
  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, have been told they have a 20% chance of their undifferentiated connective tissue disease turning into scleroderma, or, lupus, or Rheumatoid arthritis. You can search the forum postings under 'scl70' to see who else has posted on this issue. It's becoming clear to me that, as scl-70 positive individuals, there is far more variation in our overall clinical experience than most research summaries or literature reviews suggest. For example, it is possible to be healthy even with a positive ANA and scl-70. :)
  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 antigen titre/level (e.g. ELISA). I'm also in the same situation as you, so do urge you to write to me, whenver you feel like it, to talk more about the issues we're facing. I've heard from several other people on these boards who are also positive for both antibodies and present with no symptoms. I'm not sure how correct I am with this (I'm sure one of the moderators could clear this up), but I had thought a false-positive is typically someone who presents with the antibodies but does not have symptoms of disease. A false-positive, therefore, stands opposite to a true-positive, where you have both symptoms and the disease. I am also taking Vitamin D - and was lacking in this. I'm prescribed 63,000 IuI/week. Remember to drink lots of water, too! Best wishes to you, Elizabeth
  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 times before, where with great effort I'm able to take care of my health and am generally fine, but have occasionally had bouts with typhoid - or upset tummy thanks to water contamination - which were always successfully treated with antibiotics, while the tummy troubles were generally cured with 'time' and rehydration salts (ORS). My concern is that with my current at-risk status, I will be doing myself a disservice by being somewhere I can potentially get sick. (Though having said that, I do realize I can get sick anywhere! :unsure: ) I've read various articles which talk about the role of viral or bacterial infections in initiating or worsening autoimmune diseases, and would be so grateful for your own thoughts or stories on this issue. How many of you have traveled to developing world countries, for instance, and do you take extra precautions to avoid falling ill? Or, do you worry that even a minor gastro-intestinal upset - or a chest cold - will cause a flare, etc? I do know to avoid pre-departure travel vaccinations, or any unncecessary injections. My rheumatologist hasn't responded yet to my calls for either an appointment, or request for a short follow-up phone call where I can express my concerns. Thank you all! Elizabeth
  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 stop traveling because of health concerns, or the issue of staying close to hospitals, etc? Saturday hugs to everyone! Elizabeth
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