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Everything posted by dimarzio

  1. 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.
  2. dimarzio

    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.
  3. 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?
  4. dimarzio

    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.
  5. dimarzio

    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.
  6. 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.
  7. dimarzio

    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.
  8. dimarzio

    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.
  9. 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.
  10. 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'.
  11. 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.
  12. 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.
  13. dimarzio

    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.
  14. dimarzio

    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.
  15. dimarzio

    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.
  16. dimarzio

    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.
  17. I've tried CBD in the hope of some relief, but noticed little effect. A lot of MS sufferers to seem to get some benefit from what I've learned. A bit of a mystery as to how it can help with fibroblasts though. I shall continue to watch this subject with interest, though perhaps maybe I need something a bit stronger.
  18. Interesting study that may pave the way for targeting the biomarker. I wonder how many of us have ever had our CCL2 measured. I do read a fair bit about all the research that has gone into gene therapy and other promising treatments and wonder who the lucky few who benefit are and how they are chosen.
  19. dimarzio

    Acid reflux and severe cough.

    I find that an expectorant for chesty coughs relaxes the throat as well as the chest, but need to be careful that it doesn't react with any other medications. Your reflux does sound pretty bad as if some kind of surgery is called for. I hope your medics can find a way to relieve it. Diet is usually the best way to manage reflux if you can, but in your case, it seems that it's not enough.
  20. 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.
  21. dimarzio

    SCL 70 results

    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.
  22. 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?
  23. 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.
  24. dimarzio


    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?
  25. dimarzio


    Can anyone with Morphea answer this for me. I honestly don't know how uncomfortable it is other than the affect on ones appearance?