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  1. Before I was diagnosed with scleroderma I was one of those people that went to the internet and typed my symptoms in my Google search bar. I then just knew that I had at least 100 diseases and now I look back and laugh at it. Like most I found sites that had chats and I would write about all my symptoms and ask “do you think I have this?” When I went to my doctor she did a lot of blood tests and she sent me to a neurologist. He did a test that determined that I had neuropathy in both legs and arms. As a result of my blood tests, when I went to my appointment she gave me the diagnosis of scleroderma. At that point it hit me hard and then she sent me to my rheumatologist. They all said there was no cure; that was about 8 years ago.My aunt agreed we now know more than we ever wanted to know. My hope is that if you get that same illness do not panic; it is not a death sentence. Do your best to keep hope that some day the answer will come with a cure and if at times you need to cry, be my guest; it can be good to have a cleansing cry. My thoughts will go to every one.
  2. Hi! I’m Amber 33 and new to the forum. My symptoms started with numbness and tingling in my hands and arms along with extreme stiffness and weakness in my hands. My doctors thought it was carpal tunnel but it didn’t make sense seeing how I had been a stay at home mom for ten years prior. Afterwards, my hands began to swell, my hip started becoming sore, I had this strange bruise type rash that wouldn’t go away down my leg, and my shoulders began keeping me up at night. My mother passed with leukemia around this time and things got even worse. My neck would pain me constantly and felt as though I couldn’t turn it. Like I had a constant crick in my neck. The rash also spread down to my calf and I began feeling a dip in my back side near the rash. My doctor sent me to a dermatologist and a rheumatologist. The dermatologist did a biopsy that came back as morphea or scleroderma. The rheumatologist told me that he thought it was morphea and an unspecified autoimmune. My ANA came back positive as well. He said I leaned more towards lupus then anything, but still didn’t hit some of the main characteristics of the disease. At first he put me on vitamin D and plaquenil but after a couple of months it had only gotten worse. He then decided to add methotrexate but also gave me a 6 week supply of prednisone that made every pain go away. It didn’t take away all of the swelling in my hands but I felt great. I had been given it once before for an upper respiratory infection and knew it would help and now that it has ended, I’m really not sure if the methotrexate has helped or if it’s just taken some time to slowly return since I discontinued the steroids. It’s been about three months since I quit the steroids and it’s just slowly gotten worse. The doctor seemed to think the methotrexate was helping, but that I needed to up the dose from 6 pills a week to 8. Then I received a call from them the next day saying my liver enzymes were elevated and that I needed to stay at 6 until my next visit in three months. I guess I’m just really looking for some advice on what to expect. Or to maybe find someone who has had a similar journey. I’m curious why they didn’t want me to lower my dosage if my liver enzymes were elevated. I don’t understand why he ruled out systemic scleroderma - not that I was hoping for that diagnosis by no means, but it seems possible. If I have to be taken off the methotrexate, what’s my next option? He said morphea can cause fat atrophy and he thinks that’s what's happened on my back side. Will that get worse? Why in this world are steroids so bad if they make you feel so good?! I’ve been dealing with this for about a year and a half now and I don’t really feel like I’ve made any great progress. Any advice would be very much appreciated.
  3. I am going to look for where a group of people lost a friend to lupus. On January 23rd they are have a bone marrow donation drive. I think that is a great thing and I saw the story on KTIV news station 4. I will look it up a little later.
  4. I know I should not worry about this blood test; most of the time I know what they are or should be. My vitamin D for the first time is normal. The one that is the most troublesome is my creatine kinase (CK) went from 36 to 78. This test was run to figure out why I am falling and why my legs feel as though I have walked 100 miles going down my hallway and back. I used to stand for a long period of time; they have started to hurt and want to go out from under me. If anyone has this problem I would appreciate to know what they did. I do have peripheral neuropathy in both legs and arms and my sclero doctor is considering that might be the problem. I just do not know why my CK would jump that much in a year. Thank you Quiltfairy
  5. My therapist asked me about my biggest fear and so have my doctors and family. In the last few years when I was in the hospital for surgery or other stuff and two times with my neck surgery I was supposed to be in overnight, but it wound up my getting a lung infection and staying in hospital for a little over a week. Not one family member came to visit and I had to find my own way home; luckily my aunt came and got me. Now that brings me to my worst fear - it is being in a nursing home or hospital dying alone with nobody there. Now that I told you mine, I want to hear others' fears. The reason I wrote this is that it is a safe place and if you don't talk about it, it will eat at what we have. I want to live to be 100 years young. I will be thinking about all the people that write it out.
  6. My family had a barbecue today and I was not sure I wanted to go. I asked my dad how my son was doing and he said he was okay, so we had lunch. I went outside with my brother and sister in law and we were talking about this, that and the other. My brother said that we all knew it would happen. That is when I was told he is in prison for breaking and entering. I think the judge got tired of seeing him; he had his chances and the last Chance was 15 years suspended. I will not put on here what the charges were. I got a little angry when I was told that it happened a month ago. People are starting to understand when I say I do not feel like a family member.
  7. The Scleroderma Education Project Website at SclerodermaInfo.org is now live. It is a major source of research–based educational information about systemic scleroderma for patients, family members, and clinicians. (Also see Scleroderma Webmaster's Association) Posted 05/11/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Hello. I am a female and 62 years old. I recently had a positive ANA and am just looking for information while waiting 3 months before I can see the rheumatologist. My ANA was 1:32 and in the comments it says anti-centromere pattern observed. A few of my search results lead me here, so I joined hoping to learn as much as possible. Two years ago my dermatologist requested that I have an ANA test because of the (as she described it) "red butterfly rash" on my face. I thought I had rosacea, but she said it is not. I tested negative. At the follow up visit she told me that did not mean I do not have Lupus, and wanted me to have another test in 6 months. 2 years later and the rash no longer comes and goes, it seems it is here to stay. She also says other signs she is seeing on my skin, hair, and nails may also point to Lupus. I have other symptoms on the Lupus list, but had explained them away with possible other causes. Because of the anti-centromere pattern comment on my report, I have researched the symptoms of CREST and Scleroderma. I do not have any of the listed symptoms other than achy joints and muscles, and tiredness. Reading many threads here, I understand that definitive answers may be a long way down the road. I am sure the Rheumatologist will order additional tests that will hopefully provide a little more insight. Since my doctor and dermatologist seem to think I have Lupus, I am wondering how the anti-centromere pattern fits into that diagnosis. Your input and words of wisdom are appreciated.
  9. Hello, I am new to this forum. I’ve had Systemic Lupus Erythematosus (SLE) for over a decade, but was recently diagnosed with systemic sclerosis. FYI: Prior to “starting a new topic” I ran a search on “lupus SLE and sceloderma overlap” and it came up with zero results. Wondering if anyone out there is in the same predicament. Thank you in advance for any input.
  10. I wonder here how many people some days feel like they are getting the flu with SD? My story, some days, I get really aching all over and feel like I am getting the flu. Then the next day it goes away. A SD doctor told me this is common, and she explained it was not just people with SD, but all diseases in this category. Anyone else experience this? I have it today, but hoping it goes away tomorrow, or else it could be the flu.
  11. Hello everyone, I am extremely new to this site as just received the diagnosis of systemic scleroderma last week. I have had medical issues my entire 59 years of life with many diagnoses only to have the diagnosis reversed. I have been told Lupus, MS, RA. This last diagnosis came after 4 years of extreme inflammation in both arms and legs. Some days, just getting dressed is impossible. I have been told my liver, lungs, cardio are all involved. I am scared, unable to find work that will accommodate the physical conditions and not sure what to do as I am separated and husband can cancel insurance at anytime. There is no specialist within a reasonable travel time for me and I wonder what is in store now.
  12. 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.
  13. My toes are cold and sore most of the time and they have a tendency to get sores. Our little dime store here in town had toesy socks for 1 dollar, so I tried them; my sore toes no longer rub against other toes, cutting down on pain in my feet and the sores heal a lot faster I even wear them to bed; also when it is cold outside I put a regular pair of socks over the top of my toes which keeps them stay toasty warm. I send out good thoughts to everyone.
  14. I have always liked fresh fruit, but having no teeth that is hard, but most food can be gummed enough to swallow. As this blank blank disease goes forward I have more trouble getting food down my throat. I was given a bag of blueberries; I looked at them and gave a look at my blender. I put the berries in the blender, added a little sugar and made a juice out of them. I still have cherries, so I am off to the kitchen. Yummy yum yum.
  15. Impact of Radiation Therapy on Scleroderma and Cancer Outcomes in Scleroderma Patients with Breast Cancer. These data suggest that radiation injury causing local tissue fibrosis is not inevitable in SSc patients with breast cancer, occurring in 50% of cases without evidence of lung or generalized skin disease flare. PubMed, Arthritis Care Res (Hoboken), 01/05/2018. (Also see Cancer and Radiation and Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. For about two weeks I had a migraine that just would not quit. There was a lot of stress going on our family; there were 4 deaths of older aunts and uncles. One was expected, the others yes and no and so I thought that was causing the migraines. To my surprise that is not the cause of the migraines; just before bed I started coughing and choking and on the last choke out came a hard thing. That looked like one of my pills and that is what it was! It was covered with phlegm, so it had been there quite a long time and must have been sitting on a nerve. Migraines are gone!
  17. I seem to be dropping a lot of stuff lately; anything from dishes to tablets to cell phones. Of course my husky likes it when I drop stuff that has food in it; that part is ok as she is a good floor cleaner. It is getting expensive buying cell phones and computer. On line stores seem to like it; it's 40 miles to the nearest store to buy those items and of course I buy refurbished and that has been a experience all its own. I hope I can get some help with this, please.
  18. I was thinking about the items I make that help me through the day and maybe I could post the patterns with step by step instructions. Also others could post what helps them to make it through. If this is not acceptable, please let me know. Thank you and I send out my blessings to everyone.
  19. 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
  20. Hello All, Any experience with benefits of Gluten free diet in managing scleroderma?
  21. Hi I'm new to the forum. I don't have this disorder but a very close friend does and it has done a lot of damage over the years mainly to her stomach and digestive system. A while ago she was diagnosed with ground glass nodules on her lungs which recently turned cancerous. The doctors are unsure how each treatment option will effect her with this disorder as they have never treated anyone with this before. I came here on the off chance of finding someone else might have been treated for similar or if there's any specialists with a specific interest in scleroderma. Hope it's okay to join on her behalf, as she's not too confident on the Internet, but I will hopefully get her joined up soon and have her up and running. Yours gratefully, Lesley.
  22. Is it possible to get or have scleroderma and the Mutation of my gene MTHFR? I have the mutated gene and I am now showing small signs of calcification in my right pinky; aka scleroderma according to my Dr. Anyone else have this? Not getting much from my Dr on how bad this could get and I am scared.
  23. Hello, I have been experiencing Alopecia for approximately 8 years and receive treatment through injections. Over the past few months, I have been experiencing significant stress and have been overwhelmed. About 2 months ago, I started noticing a dent on the right side of my forehead. It starts about a inch into my hairline and goes down to just over the arch of my eyebrow. It has been increasingly more noticeable and has become deeper over time. It is extremely noticeable and distracting. I thought this was strange, but after reading about scleroderma and the possible symptoms, I'm beginning to think that this is what was happening to me. I have noticed that there is a lot of pressure throughout my scalp and I have been getting many brain shocks, where its is like a chill going through just my scalp. I'm really concerned, and want to get to the bottom of this. I have a few questions: Is Scleroderma connected to autoimmune diseases, such as Alopecia? Since I have one autoimmune disease, is it possible I am more susceptible? Any advice on how to stop these uncomfortable feelings on my scalp? Anything I can do to get rid of the dent or stop it from getting worse? Thank you!
  24. Systematic autoantigen analysis identifies a distinct subtype of scleroderma with coincident cancer. Strong evidence was found for both intra and intermolecular epitope spreading in patients with RNA polymerase III (POLR3) and the minor spliceosome specificities. PNAS, 11/07/2016. (Also see Antibodies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. Hi everyone, my name is Ben, and I've had a dark orange colored rash that is dots surrounding my nipple on my chest and that goes around to my back. I have a lot of things that can be linked to autoimmune disease. And I am very scared of that, but also there are so many questions I have about this condition. Maybe some of you guys can help clarify things for me? 1)I know I am young to be using collagen, but I actually do put it on my face. It has other moisturizers in it. And I am scared that it may cause it to come back on my face. Mine is currently on my chest and is probably my only physical insecurity. I heard it can deform people so I would die if it came back on my face. Does anyone that has morphea also use collagen? I heard that the cause may be an overproduction of collagen so should I stop using collagen on my face? 2)My dermatologist said it is very unlikely that it will occur any place else. I noticed the "rash" when I was like 7, but just went to a real dermatologist to get it checked. I was misdiagnosed as having tinea versicolor. She said it looks like a confetti-type localized scleroderma and said that it was morphea. Does this sound accurate? It looks like orange colored dots surrounding my nipple and going around to my back. I don't feel an indent or anything. It's just like a discoloration of skin. I've had it for as long as I can remember, so I don't remember if it felt hard when I first got it because it has been so long. No tinea versciolor treatment(ointment or medication) or home remedy has ever worked on this. It has burned my skin extremely badly. But she is a CHILDREN's dermatologist, said that it was morphea and linear scleroderma, the explanation kind of sounded all over the place. She said it is indented but I didn't notice an indent. Also we had trouble finding pictures that looked similar to mine. Should I get a 2nd opinion? 3)I am planning to hopefully get laser done on this when I'm older. I am not a usually insecure person, but it has stopped me from going swimming. I tell people that it's a birth mark so they will understand, but I'm always worried people will think its catchy. Even I thought it was for years when I had no idea what it really was. Is there any waterproof makeup that you guys could suggest for this?
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