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Everything posted by dimarzio

  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.
  16. Tests and GERD

    I had to have a tube in my oesophagus for 48 hours connected to a monitor. I went back to the hospital who subsequently lost the readout, so I had to suffer it all over again a few weeks later after which the original trace mysteriously appeared.
  17. Raynaud's and warm or cold weather

    In the southern UK, temperatures are in the 20s celcius in the summer and can range from minus ten to plus ten in the winter. I find that I can gradually get used to the cooler temperatures, but sudden drops really affect my Raynaud's. Even in the summer, it may be 20 degrees, but if the temperature drops because of a passing cloud, it usually sets mine off. Wind can be another factor in my experience, but the worst is walking around supermarkets. I know that smoking is not helping, but very difficult to give up a 40 year ingrained habit. I also get what feels like Raynaud's in my eyes and facial skin, but my general practitioner thinks I'm imagining it. I also have as many problems with the heat as the cold. I believe it is due to the fact that our blood vessels cannot properly dilate and contract in either situation.
  18. The only thing I would add is that as there seems to be no cure for autoimmune diseases yet, they can only treat the symptoms, so in some ways, it doesn’t seem to matter which variant you have, the treatment is likely to be the same. We can only hope for speedy progress in research. It looks like some kind of stem cell treatment may be promising in the future.
  19. Interesting Jo as I believe Limited SSc can affect all parts of the unirary tract. Particularly the urethra and the bladder along with the spincters. Interestingly, I have had fibrosis in the urethra dealt with surgically recently, but they say this is not connected to SSc, whereas, I believe that it probably is. I just don't know whether to trust these 'experts'.
  20. Reassuring that the vaccine appearrs to be safe. I do remain concerned as to whether immunisation generally may cause Ssc flare ups, though my personal experience does not appear to demonstrate any adverse effects to date.
  21. Irrespective of what this article says, anyone who is inactive because of any painful condition is more likely to suffer from COPD simply due to inactivity. It's sometimes a case of suffering the pain to remain as active as possible as long as possible. Not easy or possible for everyone though.
  22. What Happens to Your Brain When You Go on a Diet.

    The brain plays a huge part, but there is no substitute for a healthy eating and exercise. When I was able to play sport regularly, I could eat whatever I wanted. Nowadays I have to be much more careful, especially with my high glucose levels. I've long felt that when I've lost weight,it goes back on over time because my brain is telling me my body needs to be the same weight as it was before, when in truth, it's more about gradually being less careful about what I eat once I've lost that 14 pounds or whatever I was aiming for. You don't find any overweight people in areas of famine do you? During food rationing of WW11 everyone was slim. Food, especially unhealthy food is readily available in the western world and that is the principal driver of obesity.
  23. CellCept Levoxyl

    Cellcept is an immunosuppresent and Thyroxine is a popular medication for under active thyroid. I have found no known interactions between these on the databases. If these are the two medications, they appear safe to be used together, which seems logical as they do very different things. That said, I would echo Jo's advice to double check with your pharmacy or the prescriber before taking them.
  24. I'm new to this.

    There seems to be a theme here of doctors dishing out anti anxiety pills and telling us we are imagining our symptoms or treating us as if we are nuts until a diagnosis is eventually made. I was verbally abused by a general practitioner and virtually thrown out of the surgery for making a fuss over nothing. Never got an apology though.
  25. Newly diagnosed and overwhelmed

    Hi Kellbell, I'm assuming that you have had a positive blood test result but it's too early to say much until you have seen your rheumatologist. There is currently no cure and treatment is usually symptom based using drugs to aid gastric and esophageal problems, help circulation, etc. Drugs to lower your immune response, steroids to help lung conditions, etc. Sometimes surgery is necessary too, over time for various complications. There are several variants, some of which are milder and have little effect on longevity and some more serious or that become more serious over time. Try to get a referral to a Scleroderma specialist if you can as they do have a lot more knowledge and experience in this area. In the mean time, you will find a lot of help and information on this site and by reading some of the threads on this forum. Don't panic, the majority of cases are the milder or slowly progressing variants and there are many here who have lived with the disease for 20 or 30 years. Even the more serious complications can be alleviated with surgical intervention. A lot of research is going on, especially in the fields of gene therapy and stem cell treatment and this may hopefully eventually lead to a cure for autoimmune diseases. I wish you well, but please keep in touch on the forum to let us know how things progress as we can all learn so much from each other.