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dimarzio

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About dimarzio

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  1. dimarzio

    En coup de sabre? (ECDS)

    Hi Chris, From my knowledge and experience, I would indeed think that these issues are linked. I am however pleased that you have had a formal diagnosis and appropriate treatment. Many of us have waited a long time for that. I hope that you are receiving an appropriate treatment for Barrett's Oesophagus, e.g. a Proton Pump Inhibitor. That does need to be kept under strict control. I wish you all the best and hope that the Methotrexate helps. Please do keep in touch to let us know how things progress (or hopefully symptoms don't progress). Dimarzio
  2. Hi MomZ. Sexual disfunction can be a side effect of a number of medications and/or combinations. This might be a possibility in your Son's case, though could equally be arising from the illness itself of course. Good luck in getting the right diagnosis and treatment
  3. Symptoms could result from a multitude of things or just one issue. It could be Scleroderma, though my gut feeling is probably not, though there could be a number of possible other autoimmune issues. ANA autoimmune antibody blood test might yield clues, if this has not already been done.
  4. dimarzio

    Blood Results and Worried!

    Hi again Phyllis, Limited Scleroderma is certainly an unpleasant thing to live with, but there are a lot of things that are much worse. My rheumatologist has told me that in his experience, limited scleroderma rarely results in the diffuse version and whether I believe him or whether that is true I don't know. What I would say is that I will deal with what I have and not worry about future symptoms until they occur. Keep strong and keep fighting. Don't let it get you down. We all have our crosses to bear and need to deal with them as effectively as we can. Enjoy today as much as you can and perhaps worry less about what tomorrow may bring. I wish you good luck and a long and happy life. Best wishes, Dimarzio
  5. dimarzio

    Blood Results and Worried!

    For me, losing some weight (11kg) has helped and regular exercise have both improved my flexibility. I need a lot more warm clothing now than I used to including thermal gloves, socks and hat when I go out. The aches and pains are still there, but the more I fight them, the better I get. Having a positive mental attitude has taken me from deaths door to someone who has taken up an active sport. It's a struggle, but the alternative is more awful. Fighting is the only way. If you give up, like I did at first, it is a horrible existence. I don't have many skin issues yet and my cardiac and pulmonary functions are still OK. I do have a lot of pain and stiffness and awful Raynauds in my arms, legs and face though and circulation to my eyes is a problem with deteriorating vision. Keep positive though and enjoy life as much as you can as many people on this forum have lived with this for many, many years.
  6. dimarzio

    Left Atrial Enlargement (LAE) on ECG

    It seems from what I read, that this is commonly a result of high blood pressure. What are your readings like? If this is the case, blood pressure medication and a healthy diet and lifestyle is helpful. Plenty of exercise and avoiding alcohol and tobacco products. Healthy living will help to prevent heart attacks and strokes, though this is the case for everybody really.
  7. I recommend lots of exercise and heavy breathing then Cathy. Seriously though, I get a lot of cramping in my chest, especially so in colder weather. I too am finding that plenty of aerobic exercise and stretching helps.
  8. dimarzio

    Face and sinus issues.

    I take beconase ( beclometasone dipropionate) for my sinus issues. They occurred long before my SSc was diagnosed, but I get the feeling that they may be related. My general practitioner originally diagnosed Rhinitis, hence the beconase prescription. It does help though, but most of my pain is in my ears. Apparently, the build up in the tubes from my nose to my inner ears is putting pressure on my eardrums. Several other brands of cortisoid nasal sprays may of course be equally effective.
  9. dimarzio

    Newly diagnosed with scleroderma

    Treatment is mainly symptom led, so we would need to know what these are before any of us are able to make any meaningful comment. I do hope that your symptoms are not too bad though.
  10. Had my jab 3 weeks ago Jo. I booked in using the over 65 process and they said that because I was under 65, they had to give me a different one. I have been having flu jabs since 2010 or 2011 and have never got the flu. However, it was around 2010/11 I first started noticing what turned out to be circulation problems and Scleroderma (diagnosed 2015). It makes you wonder doesn't it?
  11. I too had really bad constipation and bloating. I thought it was related to my scleroderma, bur it turned out to be the effects of certain drugs I had been prescribed. When I stopped taking them, my whole digestive system quickly returned to normal.
  12. dimarzio

    What does lung involvement feel like?

    Hi, I've had that feeling of wanting to yawn since I was 9 years old (I'm now 60 and it hasn't killed me yet). A feeling like I'm breathing, yet it's not having any effect. I've been told over the years that it's anxiety or my imagination, even though I have not been anxious at all. In fact the only time I have ever been anxious or depressed is during an 18 month period when I was unnecessarily put on anti anxiety medication. My recent lung function tests and echoes have been fine, so it seems like my Scleroderma is limited. I do however have aches in my back, hips, shoulders and legs. I surmise that most of this results from stiffening of the ligaments since my muscles appear fine. I do get a lot of cramping though that is very painful and extremely distressing. When first diagnosed, a lot of my problems did stem from a fear of progression together with the side effects of medication, which seemed to make all of the aches and pains even worse. Since losing a few kilos and increasing my levels of exercise and physical fitness, things have improved quite a lot. Actually exercising the areas where pain is felt is quite helpful and even some physio may be of benefit. My reflux cough has benefited from taking a proton pump inhibitor, together with avoiding spicy food. I find that smoking and drinking alcohol don't help me much here though. Rather than getting anxious, as I did, I found it better to fight this disease. I know it will get me in the end, but I have strived to become as physically active as I can and enjoy life as much as possible for as long as I can. A strong will and a positive mental attitude can and will help considerably. Instead of worrying, try and channel that energy into fighting and making the most of what you have. I wish you the very best in however you chose to deal with it.
  13. Having recently been diagnosed, I would hope that your doctor would arrange for an examination of your upper digestive tract along with a heart echocardiogram, kidney function tests and lung function tests as a minimum. Any other tests may be symptom led.
  14. dimarzio

    7 year old daughter with scleroderma.

    We really need to know a little about the symptoms and tests used in the diagnosis to be able to help you here. If you could provide a little more information, then one of us may be able to offer a few words of wisdom. What is making your poor little girl feel so unwell at the moment? Whilst scleroderma has no cure, a lot can be done to alleviate many of its symptoms.
  15. dimarzio

    Most parents are against teen tattoos.

    Never could understand why people would want to deface their own bodies with these things. Better to go for the temporary ones if you seriously feel the need. A friend of mine is making a fortune removing them with a laser.
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