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Everything posted by dimarzio

  1. I've been doing a little research on this and have been a number of articles and studies to read through, but this interview gives a clear, non technical interpretation: https://sclerodermanews.com/2016/05/17/tpe-for-scleroderma-interview-with-edward-harris/ Has anyone else done any research of this interesting treatment, know of any UK centres that might consider offering this or have any idea of the costs involved, bearing in mind that the NHS will not provide it?
  2. Thanks Jo, I can't seem to find anyone in the UK willing to provide this treatment though. In any event, it is pretty costly due to the frequency of treatment required.
  3. I have to lie to even get a flu vaccine. GP won't do it as I am not old enough to qualify and they dont class scleroderma as a need. Local pharmacies refuse to administer to anyone with an auto immune disease.
  4. Not particularly worried about the bottom end, but I have heard heard mixed reaction from those that have had top end, some saying that they feel like they are choking and others who say it is no big deal. I do wonder if it may have something to do with who is actually carrying out yhe procedure along with their experience and how much care they take.
  5. Interesting article Jo, Some food for thought there. Cut out cereals in my diet considerably a few weeks ago to great effect after being told by the experts for years that we need to eat more fibre. Eat lots of salad, which doesn't seem to do too much harm.
  6. Using unenhanced axial 10 mm CT sections, the upper limit of normal main pulmonary artery diameter is 3.32 cm. Pulmonary arterial hypertension should be considered in patients with values above this level.
  7. Title got my attention Jo, but the content was not quite what I was expecting.
  8. If your doctor is anything like mine, you will find it almost impossible to get an appointment.
  9. Probably a co-incidence Jo, but it was not long after I used one of these creams to treat a fungal infection that I began to get scleroderma symptoms and was diagnosed ana positive.
  10. The S stands for Sclerodactyly, which is a localized thickening and tightness of the skin of the fingers or toes. Sclerodactyly often leads to ulceration of the skin of the distal digits and is commonly accompanied by atrophy of the underlying soft tissues. It could be that this may be what you have, but you should speak to a Scleroderma specialist to get confirmation either way.
  11. Anyone else fed up with people saying "why can't you do this?" and "why can't you do that"? It seems that nobody understands what this disease does to your connective tissue. They can't understand why I can do things some days but not others and why I can sometimes endure the pain, fatigue cramping, etc. carrying our basic functions and sometimes it gets too much. I'm simply fed up with people saying "why can't you?", thinking that Scleroderma is nothing more than a skin condition or just can't be bothered to even understand what this disease entails. I know someone with rheumatoid arthritis (RA) who gets so much sympathy and understanding, yet those same people think that all of my symptoms are just made up. Most common illnesses are well understood, but this one gets no sympathy or understanding from anyone, including the medical profession. I've pointed quite a few of my friends and family towards this site and a number of other resources, yet none of them can be bothered to read anything or even watch a couple of videos. It's like Scleroderma is invisible or irrelevant and attitudes can be very frustrating and even distressing at times.
  12. Sounds promising Jo. Sildenafil has other beneficial effects too I asked the rheumatologist about this last year and he refused to prescribe.
  13. The fact is that nobody who makes the assessments has any idea what Scleroderma is or how it ravages the body. That's why it's so difficult to get any help.
  14. Possibly medication related, but also a possibility of Bell's Palsy. Could be circulatory too, but does need to be checked out to be sure it is not related to a transient ischemic attack (TIA).
  15. 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?
  16. What was it that caused you to get the test done, Jeannie? That may give us some clues about its development.
  17. 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.
  18. 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.
  19. 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.
  20. Not only that, but increased aspiration has also been shown to be linked to increased lung fibrosis in test data.
  21. 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.
  22. 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.
  23. 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.
  24. 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.