Jump to content
Sclero Forums

Search the Community

Showing results for tags 'Scleroderma'.



More search options

  • Search By Tags

    Type tags separated by commas.
  • Search By Author

Content Type


Forums

  • Worldwide
    • Welcome: Guidelines and FAQs
    • Sclero Forums (MAIN)
    • UK Scleroderma
    • News
    • Personal Support

Blogs

  • CFM Babs from Chorley FM
  • barefut impressions
  • My Two Cents...
  • Amanda Thorpe's Blog
  • Joelf's Blog
  • Michael Thorpe's Blog

Find results in...

Find results that contain...


Date Created

  • Start

    End


Last Updated

  • Start

    End


Filter by number of...

Joined

  • Start

    End


Group


Location

Found 52 results

  1. quiltfairy

    Giving up.

    It seems like every three months when I go to one or more doctors they come up with something new. On Wednesday I went to the memory neurologist, he did a MRI of my brain and it scared me. After the MRI we now know what is causing the memory problems, the falls and not being able to come up with a word that I just can't get out . I have what is called (small vessel ischemic disease) and I found that it is mini strokes; as I understand at this is not a major problem (yet) and after the blood test at the last visit I found out I have kidney problems and my thyroid is under active. I don't want to go to Omaha any more, but all the test and MRI and x-rays are giving me some peace of mind. Some people think I'm crazy by saying now I know because I am like most people; I have a distorted imagination about what the tests are for and I am going to die today or wake up with tubes coming out of every orifice and some that are just there. I had to learn to laugh and not give up which I have done at times; the only thing about that is now I get to clean up the mess. I hope others keep their heads on straight.
  2. Skin resident memory T cell population is not effectively constructed in systemic sclerosis. Regarding the contribution of circulating T cells, over–production of IL-13 by circulating effector/memory T cells is reported to be critical for more severe cutaneous disease. PubMed, Br J Dermatol, 08/18/2018. (Also see B Cells and T Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. I have today been diagnosed with systematic (I believe) scleroderma, blood test confirming 99% positive. Bit of a pain, as I already have, confirmed last week, emphysema and pulmonary fibrosis. Seems all these diseases are coming from the same source, my workplace, finished doing that job 25 years ago. Undergoing another battery of tests, MRI, Xrays of hands, heart scan and a capillaroscopy, whatever that is. Bit overwhelmed by all this.
  4. Association of serum homocysteine level and lung involvement in systemic sclerosis (SSc). It seems that the serum level of homocystein has a minor role in the lung involvement of SSc patients or its effects are modified by other factors. PubMed, Curr Rheumatol Rev, 06/28/2018. (Also see Pulmonary Fibrosis Disease Correlations) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. I had a few bad weeks; well a few bad months. I just wanted to get away. Sometimes it gets hard owning a house; so far things are starting to look up. I've been having memory trouble; I saw a memory neural specialist and I am having an MRI of my brain next week. I had severe head injuries, the last being the worst. I am still not sure what happened, although I was told what happened, which was in 2007 and I've been having a lot of headaches. I still have a dent in my head from it; I also broke my neck and nose and the company I was working for refused to let me go to a doctor. I was in Canada at the time. I don't remember most of the trip home but I must of made it. I was a solo flatbed driver. Sorry for the rant I will let everyone know what they find or don't find. I had a nice settlement, but it was not worth the pain and suffering I have every day. Some of the doctors think the scleroderma is from the fracture in my forehead. I just wish I could go back to work.
  6. Case Report: Bladder Malakoplakia in Systemic Sclerosis Patient. This is the first case report of malakoplakia in a systemic sclerosis patient. PubMed, J Endourol Case Rep. (Also see Interstitial Cystitis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Smoking in Systemic Sclerosis (SSc): a Longitudinal European Scleroderma Trials and Research Group Study. The known adverse effect of smoking on bronchial airways and alveoli is observed in SSc patients, but not on the progression of SSc–specific pulmonary or cutaneous manifestations. PubMed, Arthritis Rheumatol, 05/21/2018. (Also see Preventive Care for Pulmonary Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Hearing loss in patients with scleroderma (SSc): associations with clinical manifestations and capillaroscopy. Subjective and objective hearing loss were higher in patients with SSc compared to the control group and also sensorineural hearing loss, abnormal pure tone audiometry, and abnormal speech reception threshold. PubMed, Clin Rheumatol, 06/02/2018. (Also see Autoimmune Ear Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Good morning, I was diagnosed at the age of 9 with Scleroderma/morphea with patches on both sides of my neck and below the neck on my collar bone. The spot on my collar bone was very thick and had a scar tissue appearance. A biopsy confirmed the diagnosis and I was treated with cortisone tape and Vitamin E for maybe 7 years. After a few years of using the cortisone tape, the front spot thinned out completely and remained a discolored mark on the skin. I am now 55 years old. For the past few years I had a small lump where the biopsy was done and it hurt when I touched it. My dermatologist removed it and I believe that it was a pre basal cell. My question is, should I be routinely following up regarding my scleroderma/morphea with anyone? Over the years when I have mentioned it to my primary care physician or dermatologist and they have said nothing. I definitely have some arthritis in some fingers, jaw, back, but always attributed to age. Could any of this be related to the scleroderma? Thanks much, Anne H
  10. quiltfairy

    Why do we panic?

    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.
  11. Amberd521

    Morphea and Lupus?

    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.
  12. quiltfairy

    All of the above

    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.
  13. quiltfairy

    New question

    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
  14. quiltfairy

    My biggest fear.

    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.
  15. quiltfairy

    Stress.

    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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. Vladlenamo

    What tests should I do?

    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.
  22. quiltfairy

    Freezing toes.

    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.
  23. quiltfairy

    I love eating fruit.

    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.
  24. 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.
  25. quiltfairy

    Headaches.

    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!
×