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Everything posted by dimarzio

  1. Needs to be checked out because swallowing difficulties could have a number of causes including oesophagal dismotility or narrowing of the oesophagus (which can be stretched under anesthetic to improve matters.) The more sinister problems are much less common but need to be excluded. Do you have reflux problems or blood coming from either end?
  2. What was it that caused you to get the test done, Jeannie? That may give us some clues about its development.
  3. I've had the bloated stomach for many years and was diagnosed with IBS, but I feel sure it is Scleroderma related. I have found eating smaller meals more frequently helps. Can often be food or other substance problems such as alcohol, nicotine, gluten, lactose or dairy products. Try eliminating all of these for 4 weeks, then reintroduce one at a time to see if one of these is the cause. Plenty of exercise is also good for the digestive system, so try to do as much you can (good for your circulation, heart and respiratory system too). Hope this helps.
  4. Been trying it for the last 2 weeks and so far no effect. Guess I am not gluten intolerant then. However many people are intolerant to a degree, some more than others, so certainly worth a try. The only effect was on my bank balance as shop bought gluten free food is a tad expensive and so is flour if you make your own. Just give it a go and see if you feel better as we are all different.
  5. Also, sometimes symptoms can predate a positive ANA and in others it can be the other way round. Its a very strange disease especially in respect of the widely variable symptoms and speed of development. The varying subsections also make the illness very difficult to understand by many.
  6. Not only that, but increased aspiration has also been shown to be linked to increased lung fibrosis in test data.
  7. Yeah, I read this report earlier. The only comment I would make is that if you don't take them, you have a much greater risk of dying from cancer of the esophegus.
  8. Can't comment on your peeling skin, but it is quite possible to have scleroderma without any skin symptoms at all, as I can personally testify. Often, skin symptoms come later, but sometimes never. As for your skin problems being due to age; well, that is complete tosh and you need to ask for a second opinion.
  9. Just read this in the forum guidelines. Could anyone elaborate or provide the ingredient or why it is suspected to be beneficial or point me to any newsroom articles? Thanks. Nicotine—Definitely not good for systemic scleroderma, not good for health in general. OK to discuss when used in context of not healthy or about people who want to quit or have quit. Brand names of cigarettes are not okay. An ingredient in cigarettes is suspected of being beneficial to scleroderma so news articles about potential clinical trials for it are also okay; but this topic is allowed to come forth only through our newsroom articles.
  10. I'm not aware that blood tests can differentiate between limited and diffuse. Can anyone enlighten me? Itching can be horrible. As far as I am aware, treatments could include antihistamines, creams and lotions or possibly nerve desensitifying medication. All of these have benefits and side effects, but all are worthy of consideration. Patches of darkening skin does sound like morphea, but time and tests will tell. Kidney test results are worrying. Could you tell us which values were low? I do remember worrying about mine but found out later that it was not such a concern. My lung tests and echos have so far been normal so I'm encouraged by these. It's too early to tell whether it is diffuse, but even if it is, many forum members have lived for 20 years or more with the correct treatment. Good luck and I hope it turns out for the best.
  11. Ultimately, oxygen but that's a bit of a last resort.
  12. Hi KeroYosh, Firstly, stop worrying as that only makes things worse. Get as much activity as you can to help you sleep. Speak to a Scleroderma expert rather than any old rheumatologist. Progression is slow in some and quicker in others, very difficult to predict. Make sure you get heart, kidney and lung checks to reassure you that progression is not occurring and to ensure any progression is treated quickly. Stick around these forums, you will find many with far worse symptoms than ours and learn to cope with them and find their own ways to cope with disabilities. Finally, enjoy life as much as you can. This is a progressive disease with symptoms that can wax and wane. Make a bucket list whilst you still can. Progression may be a lot slower and not so bad as you think. Good luck
  13. Not sure what the definition of moderate is though. But any exercise is better than none and the more you can get the better.
  14. An ANA blood test would be a pretty good clue that it may be scleroderma, but your symptoms may equally related to something else. Alopecia is quite common - I know two women who have it. Of course, when men go bald, it's just accepted as normal. How about your eyebrows? Worrying about it will just make matters worse, so get a blood test done asap. Raynaud's is usually the first sign of scleroderma, though not always, along with swallowing and reflux problems. Hope you soon start to feel better and find that you don't have sclero.
  15. It is very difficult to say as the disease seems to affect everyone differently and progress more slowly or quickly in each of us. It is a progressive and currently incurable disease meaning it is likely to worsen over time. Fortunately, there are a number of treatments that can help to allieviate many of the symptoms and this is one of the best sites to investigate the options. I hope that with the correct treatment you will soon be fit enough to return to your previous job, if not, perhaps consider changing jobs or working part time. If getting out of the house is a problem, perhaps consider whether there are any jobs where you can work from home. Good luck and best wishes.
  16. Undoubtedly true Jo, but I don't have any grandkids yet and can't go out walking dogs in the cold. Don't mind dog walking in the spring and summer though and my daughter has two boisterous dogs who can't get enough of it.
  17. I've not heard of TENS, Shelley. Would you mind posting some detail? Thanks. I have a friend who uses carbamazepine for peripheral pain and has so successfully for many years. If my Pregabalin stops working, I shall ask for this next.
  18. I kept pestering my general practitioner and all I was offered was increasing amounts of anti depressants to shut me up. I was even thrown out of the surgery for wasting their time and told "you've had all the tests and there is nothing wrong with you". That was about a month before I got a positive Scleroderma diagnosis.
  19. Hi Erick, I think one of your problems is that you are worrying a lot about your physical symptoms because you have not got an explanation for them or a diagnosis. People in general and doctors are to quick to conclude that if they can't come up with a diagnosis, then it must be all in your mind. Keep going back to the doctor until they give you a proper diagnosis or explanation even if this requires more tests. I do agree that your symptoms don't sound like Scleroderma and you also have a negative ANA test. However, something is clearly wrong and they need to get to the bottom of it. For now, try to stop worrying if you can. It may not be as bad as you think. Perhaps try to fill your time better and do something to help you to take your mind off it, but do keep pushing the doctors for an answer.
  20. I dont know anyone who admits to having IBS, but any gastro involvement could be linked to Scleroderma, though in most cases not so.
  21. Hi Ashley, do be aware that CREST and limited Systemic Sclerosis do not result in mortality too much different to the norm unlike diffuse scleroderma where survival beyond 10 years is something like 50%. Living a healthy lifestyle can improve your odds immensely. I was diagnosed at 56 years of age, but I believe that I may have had Scleroderma mildly since childhood and almost certainly since I was in my 30's, when mobility issues first reared their head.
  22. Spongyness sounds more like Rheumatoid Arthritis than Scleroderma. Is it possible that constipation is a side effect of medication you are taking? What are you taking? For me it was down to taking too high a dose of Proton Pump Inhibitor for reflux problem, but I'm OK with a lower dose. Whilst I also have swallowing difficulties, my meds give me a dry mouth and I don't salivate enough, which makes the swallowing problems worse. Because of the side effects, I've ditched a lot of my meds as the side effects were as bad as the issue they were trying to treat. Not saying you should do the same, but worth consideration. Electric currents can be a result of nerve damage, in this respect, I would want to rule out MS. Electric currents in the wrist and hands can arise from Carpel Tunnel Syndrome. Hope this is helpful and good luck with your diagnosis and treatment. I do hope that your rheumatologist is right and that you don't have Scleroderma.
  23. Worth getting an ANA (antinuclear antibody) test too. I also have had IBS for 30 years prior to Sclero diagnosis. Cadmium could be linked as it is a heavy metal along with the lead and mercury in dental amalgum
  24. I think my ulcer was my immune system over reacting to the antibiotic, which is scleroderma related. It is healing now, 3 weeks after it began. It seems that with this disease, the body can over react to many things.
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