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  1. Today
  2. Hi Charwim, Welcome to these forums! I've included a link to our medical page on CREST syndrome, which I hope you'll find helpful and interesting. Regarding your blood test results, please see our sticky thread here. Kind regards,
  3. Yesterday
  4. I must first start at the beginning. At 27 I had trouble with my hands locking up, my legs were weak, it was about 3 months after birth of my 3rd child, had blood tests, was sent to a rheumatoid arthritis doctor in a bigger city, at which time I had a high sedimentation rate, positive ANA, so he ran more tests because he wondered about scleroderma. Whatever tests those were back in 2000 I can't remember, but I was diagnosed with fibromyalgia and arthritis at that point. Fast forward I continued to have pain etc. Over the years, around age 40 things got worse, I was diagnosed with neuropathy by a neurologist, was referred to a RA doctor diagnosed with autoimmune disorders they thought could be overlapping, fibro, osteoarthritis in which my fingers have already started to twist, some worse than others, had weird purplish nodule like things on my thighs so was referred to dermatologist by my family doctor which said those just look like small skin cysts and if they keep bugging me he could remove them which I've still not had removed. A new RA doctor took over my case just this year because my old RA doctor left the practice, the new RA doctor was awesome, she read my charts, well, what she had of them and asked me numerous questions about history. I explained about family history, my mom had been diagnosed with lupus in her mid 30s and how I'd been having issues since age 27, my aunt has some weird autoimmune disease I can't pronounce, but this doctor knew the name of it and she decided to run tests again to get a more thorough look at what others have seen with my blood tests. I always have an elevated sed rate, a positive ANA 1:640, ANA pattern is centromere, before seeing the results my doctor stated she was pretty sure it was Crest Syndrome. I was able to see my test results online, but they never let you read what the doctors notes are about the findings, only the levels and if they are abnormal, which the doctor explained that I appear to have signs of Crest the numbing of my fingers and feet get so cold that when they do warm up they turn red and swell, I have patchy dry skin on my forehead, arms, sometimes my hip or rear end, I have a tattoo that has become hard and swollen with peeling skin, I have those purplish nodules on my thighs that have dry skin in the middle, I have had issues with swallowing. Matter of fact I choked on a French fry 3 years ago which threw me into pneumonia that lasted approximately 3 months because it kept coming back, every time I catch a cold I have to be careful because I get bronchial asthma or pneumonia, I choke on foods and drinks if I'm not careful because I will aspirate. Can anyone else tell me about these lab tests, because the letter the doctor sent stated that just as we had talked in the office about the symptoms during your visit so if you notice any tightening of the skin please contact our office we will get you in sooner than your yearly check up. Can someone please explain the blood tests? Because from the way I've gathered I'm positive for Crest Syndrome, I am going to contact her to hopefully speak with her or her nurse to better understand everything. I have seen the ANA pattern of anticentromere and centromere so which is correct?
  5. Type I interferon dysregulation in Systemic Sclerosis. Here we describe the evidence of Type I IFN dysregulation in SSc, revealed predominately by genetics and gene expression profiling. PubMed, Cytokine, 01/23/2019. (Also see Cytokines) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 03/16/2019.
  7. Last week
  8. Doing Physical and Mental Exercise When You’re Younger May Help Ward Off Dementia. Researchers say that what you do when you are younger — including activities like reading and gardening — can affect your risk of developing dementia and Alzheimer's disease. Time Healthland, 02/20/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. This is the only thing I could find that explains what I am going through. My rheumatologist can't explain it. Red bruises that take forever to heal. I'm left with a brown discoloration. So disheartened. Wish there was something to help. Does anyone know of anything?
  10. Hi Ian, Welcome to these forums! I'm sorry to hear that so far the MTX hasn't been of any help to you. I've never taken this medication, so can't advise you from my own experience. However, many of our members have taken it with varying degrees of success, so hopefully things will improve for you and you'll start to feel much better very soon. Kind regards,
  11. Usefulness of composite indices in the assessment of joint involvement in systemic lupus erythematosus (SLE) patients: correlation with ultrasonographic score. We suggest the ability of composite indices in detecting SLE joint inflammation and their possible real–life use. PubMed, Lupus, 2019 Feb 11:961203319828527. (Also see Symptoms and Complications of Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 03/14/2019.
  13. I've been on MTX for ten weeks and as yet feel no pain relief; if anything, my general pain level in my feet is slightly worse (psoriatic arthritis). The down side so far is that I'm constantly tired and have cold like symptoms most of the time but I will persevere as I have faith in this medication and feel lucky to have been prescribed it. IAN
  14. Incidental significant arrhythmia in scleroderma (SSc) associates with cardiac magnetic resonance measure of fibrosis and hs-TnI and NT-proBNP. This first implantable loop recorder study identified potentially life–threatening arrhythmias in asymptomatic SSc patients attributable to a primary SSc heart disease. PubMed, Rheumatology (Oxford), 01/28/2019. (Also see Complications with SSc Heart Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. Hi Tennille and OzzieGuy, Welcome to these forums! I'm sorry to hear that you are both experiencing worrying symptoms. Although your doctor has advised that Raynaud's could be the cause of your purple nail beds, I must admit that it's not a particular symptom I have encountered (and I've had Raynaud's for many years). Of course, it can be a symptom of many other diseases and wisely I see that you've both had the obvious heart, chest x-ray etc. to rule out those serious problems. Tennille: Even supposing that you do have Raynaud's, it doesn't necessarily follow that you will develop scleroderma. Many people suffer with primary Raynaud's which never develops into anything more and the fact that you don't have any other symptoms, could possibly mean that, in your case, it never will. However, please note that I have no medical training and therefore the best person to advise you of any further action to be taken is your doctor. As OzzieGuy has advised the best person to treat complicated diseases such as scleroderma is a listed scleroderma expert. OzzieGuy: I do hope you will be able to obtain a diagnosis; unfortunately scleroderma is notoriously difficult to diagnose correctly, as many of our members can testify. Kind regards,
  16. I am in the process of trying to seek out a diagnosis. I have had a similar issue - along with many other symptoms. Have also had heart checked and X-ray normal. My course of action was to seek out someone who truly knows the condition. It can be a long frustrating wait though, as I now understand. I will keep you posted.
  17. Hi all. For the last 4 days my nail beds have been purple near the cuticle. Have had heart checked and chest x-ray all normal. Oxygen Sats are normal. It seems to get worse in aircon but still there even when it's hot. The doctors say Raynauds. But even in a hot shower they still stay a tinge of purple. Thoughts?
  18. Asthma: Young people in the UK 'more likely to die'. Young people in the UK are more likely to die from asthma than those in other wealthy countries, a report has found. BBC Health News, 02/20/2019. (Also see Asthma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. Hi WRC 1000, Welcome to these Forums! I'm very pleased to hear that (so far) you've escaped the unpleasant symptoms of scleroderma, despite having positive blood tests. This does emphasise the advice we always give, regarding the importance of blood tests in the diagnostic process. Kind regards,
  20. Hello, I have known that I have had the antibody Scl 70 for ~ 4 years with no symptoms. The number continues to increase slightly but I am blessed to be symptom free.
  21. Earlier
  22. Investigating asthma, allergic disease, passive smoke exposure, and risk of rheumatoid arthritis (RA). Asthma and allergies may be associated with increased risk of RA, although passive smoke exposure and earlier age of starting smoking do not appear to influence risk of RA. PubMed, Arthritis Rheumatol, 02/12/2019. (Also see Causes of Rheumatoid Arthritis and Asthma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. (Also see Current Clinical Trials and Scleroderma Experts) Posted 03/09/2019.
  24. Hi JS1616, Welcome to these forums! For information regarding your blood tests, please see our sticky thread here. As to whether having another child will cause your blood test results to change, I'm afraid it really is impossible to say (which is probably why your doctors have been unable to advise you and have suggested that as you have not had any problems previously, you should go ahead with another pregnancy, should you so desire.) Blood test results can be different each time they are taken (and can even have different results from different laboratories.) The only thing you can do is become pregnant and see what happens! Kind regards,
  25. Hi Everyone, I really hope this thread gets checked? I have a positive ANA found on blood work done in 2015. Given the "million dollar workup" by a rheumatologist and all was negative and no signs and symptoms of anything either (although looking back while writing this post I realized my scl-70 was 0.3). So I was told to not worry since the ANA titer was low ANA 1:80. Then I got pregnant and had my son in 2016 and went for a regular physical about 7-8 months after delivering and had no symptoms but was found to have Hashimoto's. This was what we all assumed was my ANA manifestation. Then my doctor repeated my ANA (it wasn't necessary but he did it) at my physical appointment a year later and it was positive again (which we already knew) and this time my scl-70 came back positive as well at 2.1. I was then sent for cardiac and pulmonary testing and to a Rheumatologist and since all was negative with the workup and she saw no physical signs, she told me to ignore it and that I didn't even need to continue to follow with her but to contact her if I showed symptoms at any point and reviewed what those were. I was then tested in August 2018 at a physical yet again and my SCL-70 was 1.4. Still no symptoms and still don't follow with anyone. I have been VERY happy about all the doctors thinking it's just a false positive BUT I do live with it in the back of my mind and at this particular time I am VERY stressed about this. I did have a second child AFTER having known that my result was false positive but now I am thinking of having a third child and I just feel like pregnancy wreaks so much havoc on your body and I don't want to "rock the boat" and cause a false positive to become a "positive". I talked to myprimary medical doctor who advised talking to my obstetrician. After talking to my OB she advised I talked to a perinatologist which I did. Now after talking to the perinatologist she advised me to talk to a Rheumatologist which I have yet to do (I am too scared!) This was a door I tried to close back in 2015 when it all first was found and I never wanted to reopen this door unless something came up symptom-wise (which thankfully it hasn't). I guess the reason I am even thinking about this is because I don't want to "rock the boat" when I'm doing and feeling good now and still a false positive and I am having a hard time finding ANY information on people with false positives for SCL-70 who get pregnant and then may or may not go onto become positive or stay negative. My doctors all think I'm had great pregnancies and deliveries so far and should just go for it and they'll monitor but to me it's a big decision since it seems so far that nobody can tell me my risk or anything. Any help would be greatly appreciated, I'm really struggling and scared to have another child but I also don't want to miss out in my life just by being scared of something that could never be. Thank you so much in advance and sorry for the long wind!
  26. PU.1 controls fibroblast polarization and tissue fibrosis. Pharmacological and genetic inactivation of PU.1 disrupts the fibrotic network and enables reprogramming of fibrotic fibroblasts into resting fibroblasts, leading to regression of fibrosis in several organs. PubMed, Nature, 01/30/2019. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  27. Shoulder–replacement surgery leads to blood clots, infections and even DEATH in one in 28 patients. Shoulder–replacement surgery causes serious side effects in one in 28 patients; scientists discover the operation is risky and the benefits often don't last. Mail Online, 02/21/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  28. Did you know you can help raise scleroderma awareness? The nonprofit International Scleroderma Network offers scleroderma awareness bracelets! Bracelets for just $2.50 each with free shipping and handling! They say "scleroderma" on one side and "sclero.org" on the other. (Also see Get Scleroderma Awareness Bracelets) Posted 03/07/2019.
  29. Incidence and predictors of aorta calcification in patients with systemic lupus erythematosus. Systemic lupus erythematosus patients had a much earlier onset and higher incidences of aorta calcium than coronary artery calcification. PubMed, Lupus, 2019 Feb 10:961203319826689. (Also see Symptoms and Complications of Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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