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Found 7 results

  1. I've had autoimmune symptoms for a few years, which had started in my younger teenage years. They were always the standard low-grade fever, muscle pain, high ANA (always around 300 when tested) , swelling and Raynaud's syndrome. None of the doctors I've seen knew the cause for these symptoms, and I eventually learned to adapt to them. Recently, I've been overwhelmed by pain, having a hard time with general motor functions (and was actually tested for motor neurone disease (ALS) ) hair loss, weight loss (I generally have a hard time keeping on weight), fingers becoming more misshapen, high heart rate with low blood pressure, sleeping a lot and I started to develop lumps on my fingers that push out white hard rock like things. In the past, years ago, I was screened for multiple sclerosis (MS), Lupus, scleroderma, rheumatoid arthritis (RA) and thyroid issues. At that time, all the information they got years ago was that my ANA stood around 300 with a speckled type, my anti-centromere B was high, my A/G levels were off and my hemogoblin was off. The other anti centomere was fine and the information was inconclusive and I was not tested for those things since. I am just wondering if this forum has any ideas of what could be happening and give any idea of what direction I should be going in. Especially since things seem to be getting worse and a recent doctor I've seen said that I reminded him of his family member with CREST and said I should go to Mayo.
  2. Hi, everybody, I live in a very warm and humid city, at least 30º C all the year. Last week I travelled to a colder city, it was autumn there (in my city we don't really have seasons) and it was about 20 to 30º C; I felt great! There people don't use air conditioners and the temperature is constant inside and outside places. I don't feel weird wearing more clothes in cold weather. Raynauds and digital ulcers are very painful and since they came into my life, I had discarded my plans to move to a colder city, but now I'm wondering what is the best thing to do. Please, tell me your experiences with Raynauds and the weather. Hugs to all. Ro
  3. Good afternoon everyone, I have joined this forum as a wife of a CREST Syndrome sufferer (Calcinosis, Raynaud's Phenomenon, Esophageal Dysmotility, Sclerodactyly and Telangiectasias). He has been recently diagnosed with this syndrome and has been on medication as follows - 4 Prednisone, 1 folic acid, 1 Potassium (every day 7 days a week). He also started with 2x Methotrexate Tablets once a week and has built up gradually to 6 Tablets once a week (the Physician has also decreased the Prednisone gradually and he is now only taking 1 a day for the next 2 weeks and then after that he has to stop in its entirety) He was diagnosed in July after being hospitalized due to paralysis in his arms. After extensive testing and a 12 day stay in hospital he was diagnosed and booked off work for three months to recover. He saw his Physician a week before he went back to work and he was very happy with his progress. He had gained a bit of weight and was walking like a normal 47 year old man should (in fact he could even dance again - albeit gently!!) The doctor was happy for him to go back to work. Since he has been back at work again I have noticed a huge change. He is battling to walk again and is suffering with severe pain and stiffness in his legs (he works for a company that builds hydraulic pumps for the mines, he uses heavy duty machinery and is on his feet all day - 7.30a.m to 6.00p.m) Unfortunately the first appointment I can get at the Physician is the 29 January 2018 and he has an appointment with his Rheumatologist on the 1 February 2018. This seems like an awful long time to wait especially when he is feeling like he does. He is convinced that the muscle and joint pain and stiffness is worse when he takes the Methotrexate - could this be? Could it be from cutting down on the Prednisone or could it be the heavy duty work that he does. I must be honest, I am at my wits end with all this. So very worried about him. I would appreciate any advice. Many thanks
  4. My wonderful wife of 33 years died last Sunday due to Septic Shock. She was very bloated in her abdomen which was not unusual for her as she had been diagnosed with irritable bowel syndrome (IBS) 25+ years ago. She vomited because of the abdomen issue and constipation. Some vomit must have aspirated into her lungs and in 4 hours she was in ER and having a ventilator tube placed into throat as she couldn't breathe. After 7 days in ICU she was able to me moved to a sub critical ward and no ventilator tube. She was improving but at age 78 and frail health there was very little chance of survival. Over the last decade or so, she had lots of reflux and was on pantoprazole for many years. She developed a very bad taste in her mouth and was unable to eat very much. She lost weight, got very little nutrition, and was malnurished. As her caregiver over the lasy 3 years and her being bedbound it was hard to get to all the doctors and tests that might be needed. Gurney transport is very expensive and we spent many thousands of dollars getting to and back from doctors. She was diagnosed with CREST last year when our doctor ran the ANA test. also last month he did ANA Titer which showed SLE. No one ever really explained the CREST issues. She has Raynaud's forever, and esophagitis, and reflux and constipation for 25+ years. Can CREST cause GI problems similar to IBS? Causing loss of mobility in the GI tract? If we had known more about CREST etc we might have done thing differently. She had Hashimoto's disease and we knew about the Raynaud's long before the CREST diagnoses. She also had very dry eyes, and mouth, and also possible vaginal dryness and pain. So from what I understand this could have been Sjogren's syndrome. Sorry. just trying to understand more about WHY things ended up the way they did.
  5. 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.
  6. Sara P: CREST Syndrome (Update) It has been three years since I've posted and I am happy to say I am still doing well..... Posted 04/15/2014. There are over 1,000 Patient and Caregiver Stories on the main Sclero.org site. Over 300 of these stories are featured in the Voices of Scleroderma book series.
  7. Hi, I'm new to the forum and have been reading a lot of the information. A support group is always helpful. I've never been that concerned with the CREST syndrome I've had for about 15 years now. Raynauds being the most worrisome of the C.R.E.S.T. conditions. In April I was diagnosed with Endometrial cancer. I had a complete hysterectomy in July. It was in Stage 1a, but the tumor was a Grade 3. I was told the margins were good, meaning the tumor was contained inside the uterus and the parts that were cut away were a good distance from the tumor (layman's terms!) Because of the tumor being a Grade 3 though it has been recommended that I have 3 internal localized radiation treatments in the vagina. I am very concerned about these treatments which will be high dose radiation lasting about 15 minutes each, once a week for 3 weeks. My main concern is due to the scleroderma risk. Not only am I concerned about possible scarring developing in the vagina, but also I've been reading that radiation can actually CAUSE scleroderma, which makes me wonder if it can make the condition worse for someone who already has it. I've done extensive reading online trying to weigh the pros and cons. I have not come up with a decision yet, but need to do so within a week. Does anyone have some knowledge about this they could share with me? I would appreciate it very much! Edie
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