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Found 35 results

  1. Hi Everyone, After 1 1/2 years of Raynaud's as well as dark and light pigment changes on her back and legs, and being followed by rheumatology for 1 year with a diagnosis of juvenile idiopathic arthritis; my 12 (almost 13) year old daughter was diagnosed with juvenile scleroderma today. The diagnosis is not a shock to me. I had suspected it all along because of her symptoms, etc. Her doctor had said "possible scleroderma", but usually seemed as though it was not likely. Today he said "this was not the news I wanted to give you, but it has become clear that she does have scleroderma". If I had heard the news at any of the earlier appointments I think I would have been prepared, but today...I just wasn't. From all that I have read, and the best I can figure out, juvenile scleroderma does not normally have as severe of an outcome as adult onset. I asked her doctor about what "type" she has because her skin color changes are on her back and legs, and today the induration that he and the nurse practitioner noticed were on both lower legs from the knees down to the toes. Again, from what I have read...she would fit the category of "diffuse systemic". Her doctor did agree with the "diffuse" but said that kids don't normally have "systemic". I know from reading the forum guidelines that no one can give "medical advice" but I am really confused about the classifications. I also took her at the onset of her symptoms over a year ago to a pulmonologist, gastroenterologist, and cardiologist. She did (and still does) poor on her lung function tests, although the DLCO was ok. So right now she has the diagnosis of asthma. Her GI did a biopsy that showed inflamation of her stomach and small intestines and she was put on a med to help with that. Her echo at cardiology was normal. How do I know when to be concerned about lungs and GI possibly being part of scleroderma? Does the fact that her skin areas that are affected started on her trunk and is now on both lower legs mean anything when it comes to determining what "type" of scleroderma she has? Oh, and she was also diagnosed today with scoliosis. I didn't even think about it until after we left, but I am wondering if it could be related to the large area of scleroderma on her trunk...even though the skin is not very tight yet, could it be preventing her back from growing correctly during these fast growth spurts? Sorry so much - a lot on my mind tonight.
  2. Hi Friends, It all started with my finger getting blue didn't take this seriously as I kept my self warm it was all good. I come from a warmer climate and as I got married I came down to Los Angeles. My blue fingers started getting blue even more day by day. My parents where more worried and asked me to show doctor as its not normal to have blue fingers. I googled and it said keep yourself warm and this happens to lot of women, known as "Raynauds phenomenon". I was not that serious for 5 years and then once it happened that I had to visit my parents and they forced me to see a doctor and my doctor scared the daylights out of me and asked me how you can be ignorant, you need to show a rheumatologist. They gave me lot of blood work and I got my reports and the rheumatologist told me that I have scleroderma, I am positive for Scl-70 and he told tme here is no cure and no one knows how it comes. As I live now in Los Angeles he asked me to meet doctors here as I have to be under cure every three months, I have to see doctor. So I was not clear with what happens? How everything will be? What is causing it and will I have babies? These things where bothering me a lot. As I came to Los Angeles the first thing that I did was get insurance in Kaiser Permanente and then got my appointment with a rheumatologist and she asked me to get blood work, echocardiogram, and pulmonary test. With my 1) blood work everything was good, my kidneys, liver, etc. were all good 2) echocardiogram was all good too 3) pulmonary test showed moderate restrictive lung disease which is consistent with scleroderma and asked me to get CT scan of lungs and scan of the thoracic. They did find something like low lung volumes. Hazy markings in the posterior lung bases most likely atelectasis and 1.5 nonspecific anterior mediastinal soft tissue nodule, residual thymus tissue. I really didn't understand anything that they said. So when I met my doctor she told me to meet a "lung specialist" so she discussed the whole report and ask me if I was a premature baby I told her no and she told me we can do one thing, lets get a pulmonary test done again and we should get even a sniff scan. The pulmonary test should be done every three months so we get to know what happening. So I got my reports and there were all the same. She asked me to get it done after three months and when I got them done the results where very bad so she asked me to get one more CT scan done. This time they found something increasing and she asked me to meet a surgeon. When I meet the surgeon he scared me; he was worried about the increase which seems like a "tumor" and asked me to get more tests done: CT scan with contrast and PET scan. I got my CT scan with contrast; then the surgeon told me that they don't see the tumor or anything, it has disappeared, and he said someone is really looking out for you because everything looks good and we need to wait for PET scan so we will have a clear picture of what it is. I have done my PET scan and I'm waiting to meet my doctor. I'm going to meet him on the 6th Feb 2013. Well if everything is all right I will have to have a biopsy operation on the 8th March 2013, to see what are the hazy markings I have on my lungs because those also are increased from past scans. I'm really scared to what is happening. There is no clear picture too what will effect first and it's a little frustrating. As I had planned to have baby by now as I finish 6 years of marriage. I can't even be on tablets as I need to have baby. Please let me know if anyone is going through this same disease as I'm going. I know everything will be okay. I just need a support of friends who is going through same as I am.
  3. I hope some of you can give me helpful information. My brother has been diagnosed with several auto immune diseases. One of them is Raynauds. Right now his fingers are in a terrible condition: black, drainage from around the nail, sensitivity in the fingers, etc. They are a mess. He is wearing gloves, on several medications and is being seen by a rheumatologist. Do any of you have this type of condition with your fingers and to the extreme like his fingers. We are very concerned that he may lose some of his fingers by just the appearance. Any helpful comments in this area would be greatly appreciated. Thanks
  4. I am having an awful time with my hands and feet so far and It's not even "winter" yet!! I started a very part time job a couple months ago, I work one day a week LOVE IT!! They keep the office at 62 degrees :( !! Yesterday I was sooo cold I could NOT get warm. I can't wear gloves or mitten at work because my job is laying out a newspaper and I need my fingers free to be able to work.)!! I came right out and said several times, "Oh, its freezing in here I can't warm my fingers up", but to no avail. I ended up going to the bathroom and running my fingers under warm water. The problem is this, well there are actually two: Once my fingers spasm I can not get them warm, the color is either red or black! I just saw the rheumatologist 2 weeks ago and he noticed the capillary delay and mentioned it to the PA working with him. My fingers are constantly in pain or numb.. Also, I have been so stiff, I hurt all over every joint! I just want to cry. :( I am not sure if the swelling in the fingers and hands is due to the Raynauds or if it is sclerodactyly!! ((SCREAMING IN FRUSTRATION)) The other problem I have is how can I get them to turn the heat up in the office without going into such labored detail about my illness :( which they won't understand anyways? I fear this is going to be an awful long winter up here in the north. <Sigh>. I hope everyone else is keeping warm and symptom free. I have fallen into the pity pot and I can't seem to climb out. I am sick of being ill.
  5. From the album: Jalee's Symptoms

    I was told that this was Raynaud's even though it's just in the nail bed.
  6. Good morning everyone, I hope this finds you all well. As fall approaches in the Northeast my Raynaud's is getting more active. I am on my third medication for the symptoms. I am about to try Dynacirc (a blood pressure medication) and I am wondering if anyone here has tried or is on it, and if so have you had any relief from using it? The next step if this one doesn't work is the generic for Viagra or Cialis. Has anyone been on those? I am just wondering when I should give up and say I fought a good fight! I am worried about side effects from these medicines. As my Scleroderma expert said, sometimes some people just don't respond to any medications. I wonder if I am just one of those people.
  7. Hi All, Well, after having a little scare with my Raynauds, and a short spell in hospital, I'm not taking my Raynauds a little more seriously than I had previously. In line with this, I am looking at options to keep my hands warm, especially at work (at home, I can use a hot water bottle - easy!). I work as part of an IT Support team, and as such, I am sat at a desk for most of the day, using a mouse and keyboard. My biggest issue is keeping my hands warm whilst working. Yes, I can take my hand away from the keyboard/mouse to warm it up - but this affects my work - I can't work whilst I'm trying to warm my hands up (at least, not efficiently). I would be really grateful if anyone has any information/feedback on things like : Heated Mice Heated Mouse Mat Heated Arm Rest/Support Heated Keyboard I've had a little look-see around the internet, but as I am UK based, I think I may struggle to find anything here, as all I seem to find are links to US websites. Thanks for reading, and here's hoping one of you knows something about these heated pieces of IT equipment - which I'm hoping will be the saving of my fingers - literally !! Take care out there LD x [Moderator Note....if you have the actual details of any products, please send them to Lil Dee via a PM. Thanks!]
  8. Hi, I was diagnosed with Secondary Raynauds in January of 2011. It was brought to my attention by a friend of mine that my Raynauds is not the typical presentation of Raynauds. I get attacks when I am taking a bath and my feet are in the warm water. I also get attacks after my legs would get all red and there would be inflammation of my skin. It would almost seem the heat triggers my Raynauds just as much as cold does. I also get the purplish/blackish coloration on my knuckles when I am cold or in warm water, but not the tip of my fingers. I also get it on the palm of my hand nearest to the thumb digit. I am wondering if anyone else experiences this; my friend's rheumatologist said it didn't sound like Raynauds.
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