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Everything posted by dimarzio

  1. Whilst I have no heart or lung symptoms, I have a periodic echocardiogram and lung function tests. This is normal practice where there is a diagnosis of Scleroderma. I too have been perplexed by different approaches taken by the rheumatologist, at times seeming negative and at others, more positive. General aches and pains are not uncommon, typically in the hips and lowerback, but also around other joints and in the neck. Exercise and physio can help a great deal.
  2. Live everyday as if it were your last. That's what I'm doing. I will fight this disease for as long as I can. The thyroid issue is pretty easy to fix. The kidney problems need more detail to be able to fix and I'm not sure what to say about the small vessel issue other than that a blood thinning drug might be able to help. Hope it all turns out well for you, but keep on fighting. Dimarzio.
  3. Hi Brenda, I am sorry that you have been diagnosed with Limited Scleroderma. Yes, your digestive problems could be caused by the disease, but there could be other causes too, e.g side affects of many commonly prescribed drugs or simply that our digestive systems can find it more difficult to tolerate certain foods as we get older. As far as collogen is concerned, I would be inclined to leave it well alone if possible since the disease causes an over production of the stuff in itself. Hope this was helpful. Dimarzio
  4. Immunosuppressants can take some weeks before you have any effect, Regina. For how long have you been on them?
  5. Whatever else you do, I'm sure that regular exercise and clean living will help. I've certainly found that fighting Scleroderma is much better than giving in to it, though.
  6. I had a jelly belly/spare tire amounting to around 14 pounds. In the last few months, I have lost 15 pounds. Spare tyre is still there, belt size is the same and I now have thin arms, legs and shoulders.
  7. Clearly, any immunosuppressant is going to suppress the activity of the immune system, which to me would explain why the antibody count is lower. I would therefore expect the numbers to go up again if you stopped taking the immunosuppressant. Plaquenil is not a cure, but it will presumably slow things down.
  8. I have limited scleroderma with no visible signs. The worst bits are the agonising aches and pains around the joints and terrible cramps.
  9. Hi Deanne, just a thought about the problems you have raised. Firstly, could the problem be caused by the drugs you are taking for any other issues or symptoms; secondly, perhaps anti spasm medication could help with both the flatulence and fetal incontinence? Otherwise, seek medical advice. Hope this helps.
  10. Hi Deanne, I can't speak for cider vinegar, but I have been taking half a teaspoon full of bicarbonate of soda each day for a few weeks having found out that using this to reduce the PH level of the body can help with inflamation which may be associated with autoimmune diseases. I have also found that for me, this can help with acid reflux as well. It is cheap enough, so no harm in giving it a try. I would warn against taking too much though. I just dissolve half a teaspoon full in a glass of water with my evening meal. Taking too much might, I guess, give rise to potential malabsorption issues.
  11. I also tried a gluten free diet with no noticable benefits. I do find wholemeal bread better than white though. I am currently on a low carb diet which means limiting bread consumption and am feeling somewhat better for this. As with anything, your own mileage may vary.
  12. I know three people that take it, one for a psoriasis, one for rheumatoid arthritis and one for lupus. None of them have mentioned any significant side effects or concerns. I understand that it is also useful for certain types of cancer. Methotrexate is a very common first line drug for autoimmune disorders.
  13. I asked my rheumatologist the same question. He said that in his 30 years of experience he had found very few who progressed from limited scleroderma to diffuse scleroderma, so that gives us a little more hope. I hope that the disease doesn't cause you too many problems and that you can continue to live a full and active life.
  14. The fact that we are all too podgy probably has something to do with it ,but I think there is more to it than that. Processed foods and chemicals maybe. I've managed to shed half a stone so far in a quest to get my glucose levels & BMI down. Will have to wait for the next Hba1c (hemoglobin) test to know. Not sure how much salad I can eat though before I start twitching like a rabbit.
  15. When it gets cold, I get frostbite in my hands and feet and when it gets hot, I overheat. I haven't tried a sauna for about 40 years, but this thread has reminded me that I ought to give it a go. Raynaud's seems more about temperature changes than just cold alone. I can get Raynaud's attacks just from a cloud crossing in front of the sun or a thermal draught on a hot day.
  16. I recognised this a while ago and eat a banana each day for potassium and take a magnesium supplement to counteract the proton pump inhibitors. Most of us need vitamin D, so I take that during the winter months too. I was wondering about cod liver oil, but there is a limit to how much of this stuff you can take without going OTT.
  17. Very interesting article Jo. 2 1/2 years after being dignosed with SSc, I have now been diagnosed full blown diabetic. As if the myriad of SSc symptoms is not enough, another set of problems to contend with!
  18. The only thing I can say to all of you is try to stay positive and make the most out of what time you have left, however long you think that may be. Of course, we all have hopes and fears and for most of us, it is the fear of the speed of progression. That's one of my biggest worries, but however fast or slow it may be, I am trying to keep as fit as I can, constantly pushing myself against the odds and taking the time to rest up when I need to. One of my biggest problems is that nobody I know seems to think that there is anything seriously wrong with me and has no idea of the constant pain I am hiding.
  19. Haha, I can sympathise with that. I have put a lot of money into pensions over the years, but if I do go early, then my wife will hopefully benefit from the widows pension for many more years.
  20. This could be many things Jen and of course you should obtain medical advice as quickly as possible along with any relevant tests. However, what you are describing brings something called 'coup de sabre' to mind. You may wish to look this up for further information. Whatever it turns out to be, I wish you good luck with your diagnosis and treatment.
  21. I was getting flu like symptoms for several years before I was diagnosed and put them down to allergies. I still have flu like aches and pains most of the time and exercise seems to be the best way to relieve them. I also get a runny nose and itchy and running eyes, particularly first thing in the morning. I put most of this down to my immune system working overtime and simply my body responding to this as it would if it were fighting the real flu.
  22. Hi Ana. I'm sorry that you have been suffering from so many problems, but Jo is right that your symptoms could relate to a number of causes. I just wanted to comment on your strange cough and say that I have come across a number of people who describe a strange cough as side effect of taking calcium channel inhibitors (e.g. Ramipril). Just wondering if you take these and if so, did the onset of the cough coincide with when you started taking them?
  23. 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.
  24. 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.
  25. 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.
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