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About dimarzio

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  1. What tests should I do?

    No, you need to see a rheumatologist and have an ANA test done. A full set of blood tests might be helpful if you can. There is only a very small chance of heredity and you shouldn't worry too much unless you have symptoms.
  2. Diagnosis of Systemic Scleroderma

    The problem is that so many issues and symptoms keep cropping up that nobody believes that you can be affected in so many different ways. I was told by my general practitioner that there was nothing wrong with me because I had had all the tests and to go away and stop wasting everyone's time. That was a month or two before the SSc diagnosis. Every time I said I was having problems, they just added higher and higher doses of anti depressants until I could barely stand up, let alone walk. I've been a lot better since I weaned myself off them.
  3. Diagnosis of Systemic Scleroderma

    I had never heard of Scleroderma before I was diagnosed with it either. The problem is that no one else has heard of it either and because they've never heard of it they don't think it's that serious. The doctors are just as bad; only one has been honest enough to admit that he knows nothing about it, the rest try to blag it until I start asking questions they can't answer. I do believe that none of the GPs in my local surgery think that it's serious because if it's something they have never come across before, it can't be bad.
  4. Freezing toes.

    Long johns, thermal socks, thermal hat, gloves and a warm scarf for me in the UK this week. Thinking of trying a snood next.
  5. I thought that Scleroderma was causing a lot of my digestive problems, but when I stopped using the anti depressants they were giving me for my "imaginary symptoms" before they eventually diagnosed Scleroderma, a lot of them improved.
  6. Headaches.

    Glad you got that sorted. I do get the feeling that my headaches may be down to blood vessel constriction. Might also be related to ocular bloodflow causing eye strain. Just a feeling based on experience.
  7. Hi Yoshi. Sorry to hear that you are having problems that may be SSc related. It's a bit of a 'how long is a piece of string' question as the disease affects so many people so differently over largely differing timescales. Apparently there is only a very small level of heredity, but I have read enough on this forum to question this. I have Limited Ssc and my rheumatologist told me that in his experience, very few with the limited variant ever go on to get full blown Scleroderma. Life expectancy with Limited SSc is close to normal, but for diffuse patients, the outcome is not so great. There is a section on this site somewhere that covers life expectancy. I'm finding that a positive outlook is very beneficial. Accepting that I have this illness but pushing myself as hard as I can and trying to achieve as much as I can on my bucket list. I may have 2 more years or I may have 22. I don't know, but that is the case for everyone really. Things can change. 2 years ago, I couldn't drive, could barely walk, couldn't go outdoors in the winter, was planning my funeral and looking at assisted suicide, now I am learning to fly paramotors, largely because I was given medication which has kept most of my physical symptoms under control along with a lot of effort and willpower. I hope things turn out well for you and that you continue to share your experiences on the forum.
  8. New to this site with many questions

    I've learned to live with the tiredness. I don't try to fight it so much any more. If I need a lie down, I have a lie down. Sometimes I just need another coffee to keep me going for an hour or two. Best not to fight it too much though. Take a break, take a nap if you can and you will feel much better for it.
  9. I get hot and cold due to circulation problems. It takes me a very long time to adjust to moving from a warm room to a cooler room, from being indoors to outdoors or from shade to sunshine. I also feel feverish at times. Cold one minute to burning the next. It feels like the flu, but I put it down to an over active immune system. Certain drugs can also have this effect. There is a lot to consider when you have Scleroderma.
  10. Just getting milk out of the fridge is often enough to turn my fingers white. Then I wrap my hands around a hot cuppa to warm them back up.
  11. New to this site with many questions

    Hi Tracy, I've read through your post a couple of times and have to say that your symptoms are practically the same as mine. I too have no noteworthy skin symptoms and my fingers only go stiff when they are cold. My rheumatologist seems only concerned about skin and doesn't seem to be concerned about any of the other symptoms. He seems to suggest that scleroderma is not that bad if the skin is OK. I would say that my skin is now very sensitive and gets itchy along with burning sensations at times, but because he can't see it, it apparently is in my imagination.
  12. Anyone with these symptoms should consider having an ANA antibody blood test as a matter of course. Not 100% proof positive, but is a test you need to see if it may be Scleroderma. Do be aware that the majority of Scleroderma diagnosis are of the limited version, so it's not necessarily doom and gloom. In your case, it may just be primary Raynaud's, but further tests and examination are required to get a clearer picture and a diagnosis. Do you have any other symptoms?
  13. Ulcers on fingertips from Raynaud's.

    I've seen some interesting stuff on using manuka honey and doctors using fish skin to dress wounds. Lots of other stuff too.
  14. Mildly positive

    I find that the more exercise I have, the better my poor circulation becomes and all of the achy limbs improve a little for a while. The benefits don't always last too long though. It is possible, in fact quite likely, that if you are taking anything to counter depression, it can slow down your gastro tract and cause constipation, I thought Sclero was causing mine before I stopped taking them and bowels came back to normal. Exercise and plenty of green vegetables also helps. Cereals do not help me, but many find that they do. I take Vitamin D in the hope that it is helping, but most of us are low in this unless we live in sunny climates. One thing I would say is that symptoms do wax and wane from time to time. I do hope you begin to feel better and that your medics can find something to help.
  15. Pleased to see that you found this article worth posting Jo. Research has shown that most people living in northern climates, e.g. Canada, UK and Scandinavia are low on vitamin D. I've been supplementing with it for some time now. A lot of doctors believe everyone should supplement here in the UK. As regards other vitamins, most are a bit of a waste of money if you eat a balanced diet.