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  1. Today
  2. Hi all, I've been reading some threads and posts for a couple months but finally joined today. I guess I’m looking for someone to understand what seems to be happening. About 10-12 years ago I was diagnosed with antiphospholipid syndrome after multiple miscarriages. My brother had been diagnosed with RA previously and I’d had a positive ANA several years prior and Raynauds but nothing else until then. I was supposed to have yearly checkups with rheumatology but of course, I didn’t. Fast forward to about 5 years ago, my Raynauds was getting worse, I was having more joint pain and went in for a checkup. They did a full panel of tests, I was again ANA pos, speckled, almost everything else was normal except my vitamin D was super low and the first 3-4 times they ran an Scl-70 it was positive, which he said didn’t make sense, so they sent it somewhere else and it was negative, so he ruled out scleroderma. He said I had no other symptoms of anything, and I should just get regular checkups and come in if I had any other problems. Which brings me to now. A few months ago I started noticing more pain and stiffness in my hands. A few of my joints looked swollen and the skin over them was tight and stiff. My first thought actually was RA since my brother has it, but I also considered that it’s winter, or I just hurt my hand on something; whatever, the mental gymnastics we go through to explain these things, right? I made an appointment with my primary care physician in January, she looked at my hands and said it’s nothing, looks like osteoarthritis, take some ibuprofen. I told her I needed a referral to rheumatology which she begrudgingly gave me saying they likely won’t even make an appointment for me. I called, they let me make an appointment but the first available was May (4 months away). I still have that appointment scheduled. In the 3-4 weeks after that appointment, my symptoms started to very quickly escalate. I was having more stiffness, numbness, pain, weakness, I couldn’t sleep, my fingers were tight and I couldn’t make a fist. So I went back to my primary care physician in February who said it was carpal tunnel and told me to get a brace. She also ordered some rheumatologist labs and an X-ray and electromyography ( EMG) of my hands. The ENA 5 was normal, sed rate normal, ANA >=1:2560 speckled, rheum factor neg, Scl-70 neg, X-ray showed some erosion of bone, EMG showed carpal tunnel with nerve damage. I bought a carpal tunnel brace for night time which has helped me sleep. Thank goodness. That was a month ago. It’s progressed to the point that now I have pain in all my joints, my wrists and elbows “crack” sometimes when I move them causing sharp pains, my hands are so swollen, weak, painful and stiff that I can’t hold silverware or a pen, I can’t brush my teeth or squeeze my shampoo bottle or peel a banana. I called rheumatology several times to try and move my appointment up from May but they said they could only put me on a cancellation list. I spent two days on the phone with my primary care physician’s office to get another referral to a different rheumatology office, and finally got an appointment for this coming Tuesday. That right now is my saving grace. Because otherwise I would be sinking even deeper into a depression at this point. I don’t know what else to do and I feel like an invalid, asking people to help open doors and cut my food or whatever. I’m in constant pain. It’s escalated so quickly and everything I look at tells me it’s likely scleroderma. Like I said, it would be so nice to have someone understand what I’m going through because it feels like everyone is dismissing it or diminishing it. Is this all normal? Thanks.
  3. Morning Allyson, When Gareth was first diagnosed at age 18, his complaints were his esophagus, major fatigue, and chest/voice. His pediatric gastro doctor is the one who ordered the Sclero panel for blood work when his food swallowing study showed his esophagus was hardened. He only had internal issues with his esophagus, vocal cords, diaphragm and the doctor called it sine scleroderma. The Scleroderma specialist, in Pittsburgh, said it was Undifferentiated Connective Tissue Disease (UCTD) because he had no skin issues, capillary damage, or Raynaud's. UCTD can be just as damaging as scleroderma, although I don't understand what the difference is between it and sine scleroderma. He was placed on Plaquenil 6 months after initial diagnosis and, after about 3 months, he told me his *food tube* was working again. The fact that he was male, 18 years old, and had no other CREST symptoms, threw everyone off. Over the past 11 years, he has developed degenerative arthritis and needed surgery for that in his neck. He is showing signs of progressive disease, so we are watching that closely. He needs his esophagus stretched every 12-18 months and the doctor says it looks like a silly, curly straw because it's so contorted by the hardening. He does have asthma; not sure if that is from the diaphragm issues (Chostrocondritis) or not. When he does talk, he stutters badly and that is probably from the initial hardening of the vocal cords. I am constantly telling him to *take a deep breath* so he can talk without stuttering so badly. Internal hardening around the gallbladder caused that to flare up and it was removed. Blood work - has your daughter been tested for immune deficiencies? Some doctors are finding a correlation between autoimmune and immune deficiencies. Gareth falls into that category, too. At age 20, we found out he has Mannose-binding lectin (MBL) deficiency and IG 2/4 deficiencies, thus the inability to fight bacterial infections. He had always been a sickly kid but was never tested. I always wonder if the immune deficiencies led to the autoimmune issues, but his grandfather had rheumatoid arthritis, so that shoots that idea down! He started receiving Gamma globulin infusions shortly after diagnosis and continues to this day, every 4 weeks, religiously. He had a Power Port installed last year because his veins are shot in his arms, again - autoimmune related or immune related? We take each event as it comes and he gets patched up and sent on his way. He has a fantastic group of specialists and nurses at the local hospital know us well!!! Our bodies are a very complicated piece of machinery that is so finely tuned; once it gets out of whack, anything can go wrong. I realize dealing with a 5 years old child is completely different that an 18 years old, but I hope she gets the best of care with considerate doctors. You're in my thoughts. Take care, everyone. Margaret
  4. Yesterday
  5. Pulmonary arterial hypertension (PAH) in the setting of scleroderma (SSc) is different than in the setting of lupus: A review. This review highlights the differences between SSc–PAH and Lupus–PAH. PubMed, Respir Med, 2018 Jan;134:42-46. (Also see Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Thank you Margaret for your message and insights! I’m so sorry to hear about all you and your son have been through. I’m glad to hear his leg pain was completely relieved after surgery, but what a hard thing to have to witness your child to go through. Just curious, was your son only showing symptoms of the esophagus dismotility? I honestly thought it was allergies. She clears her throat ALL THE TIME. Sometimes her cough gets so persistent it will weaken her voice. She also complains often that something is stuck in her throat, or that her food won’t go down. She constantly needs water. She’ll drink an entire cup at night even and starts to get anxious if she doesn’t have a glass of water near her bed. I know that people can have positive ANAs or otherwise positive blood exams, I’m just curious to know how many people might test with such a high ANA anti centromere pattern 1/1280 for over a year and not have it manifest? Her WBC & RBC counts are constantly elevated and while her hemoglobin is low. She’s microcytic.. Thanks for your time, Allyson.
  7. Thank you so much for both of your kind and thoughtful messages. It is such a hard thing to see a child suffer and not know how to help. We’ve taken her to so many rheumatologists and they always send us away saying all is ok and to follow back up later. Then we get back home and all the worry starts all over as she starts to complain of different symptoms. It’s been one year now and it’s such a struggle and at times it seems I am the only one concerned about her health and well-being. The doctors keep telling me, “What’s common in medicine, is common.” Meaning that until she has loud enough symptoms for them they don’t care to look further. But I see a completely different child. Thank you so much for the links and list of specialists in my area. I greatly appreciate it!! Allyson.
  8. Last week
  9. Concussions Can Be Detected With New Blood Test Approved by F.D.A. The Food and Drug Administration approved a long-awaited blood test to detect concussions in people and more quickly identify those with possible brain injuries. New York Times, 02/14/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Circulating prolactin levels and Behçet's disease: A meta–analysis. This meta–analysis of current evidence suggests that circulating prolactin levels may not be higher in patients with BD than in controls. PubMed, Cell Mol Biol (Noisy-le-grand), 2018 Jan 31;64(1):14-18. (Also see Behçet's Disease) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 03/21/2018.
  12. Diagnosis of Systemic Scleroderma

    Shelley, Thank you for your kind words and even though a double edged sword, just knowing what I am dealing with has reduced much stress as I can now say what is wrong instead of just "They (the doctors) just don't know." I am at present attempting to put my team together in this local area while awaiting the only Rheumatologist in the area that has any experience with scleroderma. Since I already have a cardiologist, dermatologist, orthopedist, and nephrologist, I am trying to secure a pulmonologist and gastroenterologist. I just hope that once the team is in place things will slow down a bit. Barb
  13. Case Report: Characterization and Treatment of Unilateral Facial Muscle Spasm in Linear Scleroderma. We report a case of linear scleroderma associated with spasm of muscles innervated not only by the trigeminal but also by the facial nerve. PubMed, Tremor Other Hyperkinet Mov (N Y). (Also see Localized Scleroderma: Linear) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Diagnosis of Systemic Scleroderma

    Hi Devonsnana, Welcome to Sclero Forums! It's a double-edged sword being diagnosed with scleroderma, after such an incredibly long struggle. I'm very sorry you have scleroderma, plus everything else. That said, I'm glad that you finally know what you're dealing with.
  15. Do I Get Enough Vitamin D in the Winter? Most people can make enough vitamin D from sun exposure during the summer, but for many, synthesis can be inadequate in the winter. New York Times, 02/16/2018. (Also see Vitamin D Deficiency) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. Associations between vitamin D receptor polymorphisms and susceptibility to Behçet's disease: A meta–analysis. This meta–analysis demonstrated the association between FokI and ApaI polymorphisms in VDR gene with the risk of BD. PubMed, Immunol Invest, 2018 Feb 1:1-14. (Also see Behçet's Disease and Vitamin D Deficiency) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  17. Diagnosis of Systemic Scleroderma

    Quiltfairy and Dimarzio, I am lucky in the sense I have a good support system. My fiance`and daughter try, but wish they would without me having to ask. I have no one outside them to speak to and I just graduated with my master's in psychology so I can guarantee I will not be drugged unnecessarily. Even with all the physical problems I have decided to continue my education for licensure in my state of Georgia. With all the other medical diagnoses and being a 5 time cancer survivor I took a different look on life than many. When I first posted I was scared and unsure and failed to remember my own outlook. I have my head on straight but it greatly helps blogging here with you all. Knowing you're not alone aids in increasing the ability to deal with the issues we all face.
  18. Earlier
  19. Cytori Scleroderma Trial Data Presented at Systemic Sclerosis World Congress. Cytori Therapeutics, Inc. presented data from the U.S. 88 patient, 19 center, randomized, double blind, placebo-controlled STAR clinical trial of Cytori Cell Therapy™ (Habeo™) for the treatment of impaired hand function in patients with systemic sclerosis (SSc). Globe Newswire, 02/15/2018. (Also see Habeo Cell Therapy) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Test results.

    Hi Andrea, Welcome to these forums! As Margaret has mentioned, positive blood tests can help in the diagnostic process, but they are by no means the be all and end all of a diagnosis, as scleroderma is extremely complex to diagnose and it is possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Far more important are the clinical signs and symptoms of the disease. We actually have numerous threads on this subject. We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise. Your specialist/rheumatologist is the best person to advise you on the results of your blood tests. I've included a link to our medical page on Antibodies in Systemic Scleroderma, to give you some more information. Kind regards,
  21. Test results.

    Morning, anything over 1 is considered positive, but it doesn't say anything about the range. Many on this site have positive blood work with no signs of scleroderma. Others have full blown affects of scleroderma and have negative blood work. If you have signs of scleroderma, then a trip to a Rheumatologist would be recommended. Take care, Everyone. Margaret Mom to Gareth, 29 years old, DS/ASD
  22. What tests should I do?

    Thank you very much, Joelf. It’s very helpful and informative.
  23. High Blood Sugar Levels Tied to Memory Decline. Increasing blood sugar levels are associated with cognitive decline, a long-term study has found. New York Times, 02/12/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Hi Sha, Welcome to these forums!! I'm sorry to hear that your daughter has been unwell and has had positive blood tests for scleroderma and CREST syndrome and I've included links to our medical pages to give you some more information. Although skin symptoms are not always present with scleroderma (I have very little skin involvement, merely the tips of my fingers) just having positive blood test results does not mean that your daughter will necessarily develop the full blown disease. Far more important in the diagnostic process are the clinical signs and symptoms of scleroderma. Please note I have no medical training, apart from a now out of date first aid certificate, but the symptoms you describe could relate to other health problems, which is why you do need to get a good rheumatologist to help and advise you. I've included a list of our scleroderma experts, should you require this further down the line. We do have a medical page on Celiac Disease and Gluten Sensitivity, which I hope you'll find helpful and interesting. Kind regards,
  25. What tests should I do?

    Hi Vladlenamo, Welcome to these forums! I'm very sorry to hear about the loss of your mother. There are several types of scleroderma that are known to run in families and researchers have found some genes associated with the development of the disease. This does not mean, however, that scleroderma is a "genetic illness" per se. They estimate that it is genetic in only 2% of scleroderma patients. However, there are some genes that set the stage for the development of autoimmune disease in general, and scleroderma in particular. There is about a 30% chance that children from parents with any autoimmune disease might eventually develop any autoimmune disease or autoantibodies, or, more commonly, just a symptom or two of any autoimmune disease. I've included a link to our medical page on Causes of Scleroderma: Genetics, which I hope you'll find helpful and informative. Please note that I have no medical training (apart from a now out of date first aid certificate). Although blood tests can be a useful diagnostic tool, they are only a small factor in the diagnostic process, as it is perfectly possible to have positive antibodies and yet never go on to develop full blown scleroderma and vice versa. Far more important are any clinical signs and symptoms of the disease and as you haven't stated whether you've had any reason to believe that you do have scleroderma (apart from your mother) I would advise that if you're not actually experiencing any particular symptoms, you should simply monitor the situation to see if anything does develop (meanwhile getting on with your life as best you can.) Should you find yourself developing any positive symptoms, then that would be the time to consult a listed scleroderma expert. Kind regards,
  26. Test results.

    Anti-centromere Ab>240 was my blood test result. Where can I find a chart or graph to show me a range of results? What is normal? Is this high or very high? Thanks. Andrea
  27. What tests should I do?

    Thank you very much for your reply, dimarzio. I've recently had a blood test with my primary doctor. Would that show any as suspicious results? Or I need specifically ANA blood test? Thank you again
  28. What tests should I do?

    No, you need to see a rheumatologist and have an ANA test done. A full set of blood tests might be helpful if you can. There is only a very small chance of heredity and you shouldn't worry too much unless you have symptoms.
  29. Diagnosis of Systemic Scleroderma

    The problem is that so many issues and symptoms keep cropping up that nobody believes that you can be affected in so many different ways. I was told by my general practitioner that there was nothing wrong with me because I had had all the tests and to go away and stop wasting everyone's time. That was a month or two before the SSc diagnosis. Every time I said I was having problems, they just added higher and higher doses of anti depressants until I could barely stand up, let alone walk. I've been a lot better since I weaned myself off them.
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