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Found 13 results

  1. Plasma α-L-fucosidase-1 in patients with Sjögren's syndrome (SS) and other rheumatic disorders. This preliminary result should encourage further research on α-L-FUCA-1 as a possible differential serological marker of SS. PubMed, Int J rheumatologist Dis, 08/16/2019. (Also see Diagnosis of Sjögren's Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Diagnosis and management of linear scleroderma in children. Clinical evaluation, both physical exam and history, is the most important aspect in diagnosing and assessing activity of linear scleroderma. PubMed, Curr Opin Pediatr, 05/30/2019. (Also see Juvenile Scleroderma Research and Linear Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. I've looked up the different things that I've went to doctors for, like the red dots on my face, chest, and upper arms. My eyelids are thickening and changing colors. I have a big brown patch on my face, I have crusty skin on my hands and arms. I have IBS and a peptic ulcer, I've had pulmonary embolisms, and I get pleurisy. I have more, but I live in Southwest Missouri and there's not much advancement here. What kind of doctor would be best to talk to?
  4. Hello, my mother passed away from systemic scleroderma. I wanted to ask what kind of tests I need to do for myself and what kind of doctor should I visit, is it a dermatologist? Thanks everyone in advance.
  5. Hi all, I'm new to this forum. I'm a 25 year old male currently in a graduate program in NY. For the past several years I've had cold sweaty/clammy extremities (e.g., feet, hands, nose, knees), with blotchy discoloration. This is rather persistent, and I never really questioned it. A few winters ago, I noticed my hands looked red and irritated (with raised bumps, mildly itchy). I was initially told I had a skin reaction, but after the same thing happened the following winter, my primary care physician assumed it was Raynaud's Phenomenon (RP) . About a month ago, I noticed the same kind of blotchy bumps and went to see my primary care physician, once again, who said it was RP. Out of expressed concern, they ordered an ANA (IFA) test for me. It came back negative, however before I got this result, I booked a follow up with a rheumatologist. When I went in, I gave her my description of my hands in the cold: I have rather persistent discoloration: red hands, without CLEAR cutoff/pallor or phasic shifting. I do however have pretty persistent blanching in all of the area that I previously mentioned that extend to my whole hands (not only fingers), knees and feet, with sluggish blood return. I must say again I've never really had "episodic" reactions to cold, just persistent (possibly acrocyanosis). After discussing the discoloration, I also told her that the nailfolds on my hands are regularly red. She looked at them through a magnifying glass and concluded they were dilated, but no dropouts. Not sure if this could manifest with general poor circulation/acrocyanosis? Because of the nailfolds she ordered several other tests and an ENA: kidney functioning through urine analysis C4 & C3 Sedimentation CRP, SS-A SS-B SM RNP SCL-70 JOL All came back negative/normal except for a SLIGHTLY lower C3 (88mgdl) in normal range of 90-180 Mg/dl and a C4 at 15 in normal range of 10-40 (technically normal range, but seems on low end) Just curious if there are any other blood tests that were missed that may eludicate the conditions of my hands. Again, I don't have any "frank" pain or really specific issues besides cold blotchy hands & reddened nail cuticles. My skin, as a matter of fact, has always been rather elastic, however, "I noticed" that the index finger on my left hand feels a little different than the index finger on my right (non-dominant hand) could just be difference in skin by nondominant-dominant? Obviously, I'm extremely anxious about my health and suffer from rather debilitating Hypochondriasis from time to time, so I'm very sorry for this tirade and if I'm being in any way insensitive. I'm just curious if there are any other things I can do to figure out whats going on with my hands. I'm also curious if my chronic anxiety (that I've had since I was 8) has something to do with sympathetic NS issues that may be causing this.. Thank you for your time. -Kellen
  6. The Doctor–Delayed Diagnosis. While awaiting a correct diagnosis, patients frequently experience worsening symptoms, a decline in overall health and even death. IG Living, 11/02/2017. (Also see Difficult Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Hi all, I went to see a new Rheumatologist today and still do not have a definitive answer. Here is what I know. I have a positive ANA with a 1:2560 titer with centromere pattern, reflux disease, Raynaud's disease, mitral valve prolapse, low vit D and low blood pressure, dry eyes, some questionable red spots on my face mostly on or around my lips and some scattered brown spots on my face. I live in the midwest. All my symptoms have developed over the last 5 years or so except the Raynaud's which has been a bit longer. Two Doctors, two opinions. One says limited scleroderma, the other says no, just Raynaud's. Both have told me that scleroderma is much more common that most people think and in my case there is no treatment needed except for the reflux which I take pantoprazole. I don't want to be diagnosed with some thing I don't have, but don't want to be mis-diagnosed either and at this point don't know what to do or who to believe. Everything I've read about scleroderma has me more concerned than either of the doctors seem to be. Is it possible to have a positive ANA 1:2560 centromere pattern and not have scleroderma and it just be Raynaud's? Am I over reacting and should I just not worry? Thanks, Kathy
  8. Diagnosis of Scleroderma. Diagnosis of scleroderma is usually achieved through your medical history and a thorough physical exam. Blood tests are performed to look for specific antibodies. Posted 04/22/2015. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. For the last few years, I've experienced periods where I just don't feel well and have a low-grade fever, and experience extreme exhaustion. These usually last 2-4 weeks at a time. I never paid much attention to them. This past August, my TMJ flared up badly resulting in my jaw moving out of place. My dentist prescribed a max dosage of ibuprofen for as long as necessary, and even though I disagreed, I didn't know what else to do. Fast forward a few weeks to ankles swelling, canker sores, and another episode of feeling off with a fever. The ibuprofen never touched the fever, either. When I developed petechia on my legs and feet, I was sent to the ER. They couldn't find anything, but told me to stop taking the ibuprofen and sent me to an internist for possible autoimmune issues. After extensive blood tests, I was immediately taken off Simvastatin for my high cholesterol as there were problems with my liver. After an ultrasound and further blood work, all returned to normal. But the tests results also came back positive for Limited Scleroderma. The Scl-70 was negative, but everything else was positive. I was referred to a rheumatologist but the wait was 4 months to get in. I called one afternoon in October to see how long it might really be, and they had just had a cancellation and took me in. She said I don't have Scleroderma at this point, even though I tested positive. I was put on Plaquenil to stop whatever was happening from developing further. I have another appointment in 3 months. Since then, I've noticed changes but I don't know if they're related. I itch everywhere most of the time. I started taking Allegra D daily which seems to help a lot. I still itch but not nearly as bad. My fingers have started swelling in the morning, but it goes away as the day goes on. If I sit for more than 30 minutes, I am incredibly stiff when I get up. It takes a few minutes for it to go away and I have to walk stooped over in the meantime while it works its way out. My right heel has become extremely tender and painful. According to Google, it could be Achilles tendonitis but I don't exercise, "pump bump" but I only wear flats, or possibly a result of scleroderma. My skin is fine, although I do have a few very small spots that have no pigment. I guess my question is, are any of these things symptoms of early-stage Scleroderma? If I don't have Scleroderma, what do I have? What is the diagnosis for the exhaustion and low-grade fever? Is there such a thing as autoimmune disease without a specific diagnosis? I'm just pretty confused. Thanks for any thoughts or advice.
  10. This is my first post on this forum. I have not been given an official diagnosis yet that I have this illness so I am trying to stay positive and I have seen some very positive stories of people getting with life as close to normal as possible. I have had Raynaud's for a number of years now but recently it has become more severe and has spread to other parts of my body, feet, nose and lips in particular. Even if I am not having a full blown attack, my finger tips remain bluish and cold and I have had my first 'hack' on one of my finger tips due to skin drying out and becoming quite thin and taut. I have taken moisturising my hands a lot more seriously since that happened. I notice other changes in my hands. The skin on my knuckles is usually quite red and ruddy in appearance and I have what I would call sausage fingers and puffy hands. I am being sent to have an oesophago-gastroduodenoscopy ( OGD) in a couple of weeks as I have near constant heart burn and acid reflux. Sometimes I find swallowing quite painful and I have the sensation of food getting stuck in my gullet. The doctor gave me tablets to take to prevent the heart burn and if I forget to take them I suffer for it that day. I notice if I have been exercising - either lifting weights or running - I can experience a horrible burning sensation in my throat. I went to the doctor before holiday because of weekly visual migraines. When a neurologist saw me, he suggested they were probably brought on by stress and tiredness, and while I know there is definitely an element of truth in this, I am curious to know whether there could be a connection between this illness and this type of migraine. The doctor ran a lot of blood tests on me before holiday and I am doing the rounds of the hospital seeing different specialists. Curiously she was not so quick to refer me to rheumatology even though the tests she ran showed positive for various autoimmune anti-bodies. She eventually made a referral for me when I went to see her recently and she saw what my hands are like during an attack. I have been to gynecology due to having very large cysts on my ovaries (not sure if there is a connection?) and haematology. Both consultants have queried whether I have been sent to rheumatology. I saw the haematologist yesterday because of raised platelets. He mentioned that he thought a lot of the symptoms and problems I have been experiencing lately could be connected and he said he was going to write to my general practitioner to strongly recommend that I see a rheumatologist. The bizarre thing is I feel fine at the minute apart from the Raynaud's. I went running a couple of days ago and my fingers felt like they had been slammed in a door. I do have a history of Grave's Disease so it would not be beyond the realms of possibility to develop another autoimmune condition. I'm not entirely sure what the purpose of posting this is! I am looking for information and my search led me to this website. When I eventually get my referral, I'll be telling my consultant how to do their job... Perhaps not the best thing in the world... Thanks for reading.
  11. Hi, I'm new to the forum. I'm finding comfort in reading your stories, but still have confusion with my lack of diagnosis. I originally went in with complaints of swollen hands and feet, numbness in arms, hands, feet, and pain. I couldn't sleep at night and woke up 6-20 times to walk it off. For the last few weeks I started having significant muscle pain all over and what feels like friction rub in my tendons around my knees. It's very difficult to stand up, climb stairs, or move muscles after rest. On blood work they found high ANA and scl 70 (elevated LFTs and other issues). My doctor says I'm not manifesting the classic symptoms. I have hand and foot swelling, but no skin thickening sclerodactyly. My fingers are very dry and itchy when they're swollen. I noticed some nail fold capillary markings. My EKG, echo, EMG, and PFTs are all normal....so seems no systemic involvement. I'm not sure If I have Raynaud's. I have cold intolerance - fingers/toes are ALWAYS freezing cold and hurt if I don't warm them up - but they've rarely turned blue. Doc will monitor me over the year. He's not being very clear if I have Ssc or not, and it's impossible to know how to proceed with life when I don't know what my prognosis is. I'd immediately feel better if I had no symptoms even after testing positive, but I definitely have symptoms! :(
  12. I have tried various doctors over the years with no diagnosis. One of the positive tests I had in the past was for scleroderma but then it wasn't positive the next test so my primary care physician said it was probably a fluke. This past weekend I had what I will call a flare up. These flare ups are increasing in number and this recent one scared me so I thought I would post here to see if someone may be able to point me in the right direction. I'm 38 and in good shape physically. I tanned on Wednesday and Friday (needed for work...not something I do for personal asthetics) of this past week and felt particularly tired Wednesday, Thursday and Friday and need a nap after work each day. Friday night I felt very weak and went to bed early. Saturday morning I was very fatigued, even more weak and with pain throughout my body but had to drive my son to his driver's ed class. I got back and went to bed. When I woke up around noon I was in intense pain from my head to my toes. My joints, bones and skin hurt. My skin felt like someone was cutting me with razor blades. Every joint in my body felt like someone had pounded on each one with a hammer. I have experienced this in the past, including a month or so ago, but I always thought it was an intense flu because I may have had a minor cold or got one after the flare up. This time there were no cold or flu symptoms so it got me worried. No over-the-counter medication affected the pain, even at double doses. The pain didn't start to subside until Sunday night. Today is Monday and while my joints are still painful, my overall pain is nowhere near what it was. As for triggers, besides the tanning, I had one alcoholic beverage (an extreme rarity for me), I had worked out on Friday and I am under a fairly decent amount of stress that I try to control/reduce as best I can. Even though I am quite strong (I am a former powerlifting champion and try to stay in decent shape), I have overall fatigue and have days where I can barely climb a set of stairs. Over the years, my blood work has been all over the place. I'll be high one test then back to normal the next. I've had frequently high liver enzymes and BUN - BUN/Creatinine levels, shown positive for HEP C antibodies, positive for scleroderma, had high B vitamin levels and high iron levels indicating hemochromatosis. I don't take a multivitamin normally because they affect my sleep so the high numbers aren't from supplements. I've had diarrhea my whole life, particularly after foods with fructose. My hands and feet are always cold. I don't do anything other than shower without having at a minimum of socks on my feet. Overall, I am very sensitive to cold and get extreme shaking when others are comfortable. I used to work in an office and had to wear a jacket and have a heater at my feet. I've had a distended belly my whole life and sore internal organs upon palpation. I don't seem to have any telltale signs of scleroderma or lupus - no rashes or tight skin. I do seem to be getting more and more small white spots over my entire body, about the size of freckles, that seem waxy or hard in nature but is that from getting older? I don't know. I am a single father who doesn't have insurance. I have to be there for my son since we have no family within 800 miles. This episode this weekend scared me and really made me realize I need to figure this out, once and for all, so that I can figure out what I need to do to prevent flare ups and increase my overall energy so that I can work more and be there for my son. If anyone has any thoughts or resources, I am all ears. I'm thinking of trying to get charity care and seeing a rheumatologist but I don't know if that is the right doctor for my issues. Again, any direction you may have is definitely appreciated. I've seen many doctors in the past who throw up their hands and say they don't have a clue. I get frustrated and stop seeing doctors until I'm feeling super rundown and then try all over again with the same results. The only specialists I've seen in the past were gastroenterologists. A huge thank you to everyone for your input.
  13. Hello everyone here, I wonder if you might be able to help. My doctor sent me results with no interpretation. I have been having various symptoms over the last two years since having my baby. I twitch all over, and have transient pain in my muscles and joints. My doctor ran a bunch of immune tests and found a positive SCL-70 of 6.7 and a negative ANA. I am wondering if this has to be watched. Am I likely to get scleroderma in the future? I would appreciate any input. I am terribly worried.
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