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Everything posted by dimarzio

  1. Interesting article. A lot seems to be going in to finding a cure for MS but so little by comparison into Scleroderma. By the time stem cell transplants become mainstream, it could be too late for many of us. Stem cell transplantation could stop the march of Scleroderma as much as it could MS. Same goes for other autoimmune diseases. Autoimmune disease is becoming so much more common, yet money is still being pumped into cancer and heart research. Time for a bit more effort going into helping those with autoimmune disease.
  2. Are you on any medications? A lot of these can give you dry mouth and ulcers? Are your eyes or any other areas dry? Hopefully your rheumatologist will be able to tell you more. Some people have positive ANA results with few or no symptoms and others seem to have autoimmune disease where ANA results are negative. Diagnosis tends to be a combination of the assessment of symptoms, physical examination and ANA results.
  3. Haha, it's the biscuit or the cake which we enjoy having with the coffee that is more of the problem. Surprisingly, I don't seem to get any adverse reaction to coffee. I tried converting to decaff, but all I get is a headache. Weaning yourself off of caffeine needs to be a gradual process.
  4. Viral infections could be the most likely, but it is possible. You need to request an antinuclear antibody test, which would give a clue as to whether it is scleroderma or any other autoimune disease. Do you have any other relevant symptoms?
  5. Hi everyone, I have recently visited my Rheumatologist who says that my condition is somatic. i.e. imaginary and that I only have Limited (i.e. low grade) Systemic Sclerosis. Last year, I was hospitalised with aspiration pneumonia resulting from gastric reflux, though again, this had nothing to do with Systemic Sclerosis. He also said that I should wean myself off of my proton pump inhibitor, but when I do, I am unable to sleep due to severe reflux, which I occasionally choke on. I've recently had an operation to correct urine flow due to fibrosis of the urethra, which again is apparently not related to Systemic Sclerosis. I now have to catheterise weekly to keep the urethra dilated, which resulted in strong antibiotics being prescribed, the result of this was severe black blistering on my hand (I posted a picture of this earlier). I believe that this was a severe reaction of my immune system to either the infection, or more likely the antibiotic. My Raynauds is not considered severe, yet the pain of what feels like frostbite is simply awful (but apparently imaginary). I can definitely feel that I am getting out of breath a lot more of late, though my lung function tests appear to be OK as has been my echocardiogram and renal tests. He also thinks that I should wean myself off Pregabalin because he says that it is not being used for anything to do with Systemic Sclerosis. On a side note, my Hba1c level is 49, but my general practitioner says that I am not diabetic. Is that correct? Somatic?
  6. Can anyone with Morphea answer this for me. I honestly don't know how uncomfortable it is other than the affect on ones appearance?
  7. Do these lesions cause any pain or discomfort?
  8. Don't want to sound too negative, but lung donors are few and far between and I guess that a 73 year old may not be near to the top of the waiting list. Hope things improve for your Mum though.
  9. In that case, entirely possible, but probably unprovable unless there is a spate of others affected similarly.
  10. Long term exposure to silicone and masonary dust has been cited, but nothing I have seen suggests that a single or short term exposure may be a cause.
  11. 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.
  12. 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?
  13. 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.
  14. 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 the procedure along with their experience and how much care they take.
  15. 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.
  16. 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.
  17. Title got my attention Jo, but the content was not quite what I was expecting.
  18. If your doctor is anything like mine, you will find it almost impossible to get an appointment.
  19. 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.
  20. 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.
  21. 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.
  22. Sounds promising Jo. Sildenafil has other beneficial effects too I asked the rheumatologist about this last year and he refused to prescribe.
  23. 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.
  24. 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).
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