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  1. Hi Ana, My son started out with all + blood work and no external symptoms, only internal. His diagnosis is UCTD (Undifferentiated connective tissue disease) and he was placed on Plaquenil six months after initial symptoms, which soften his esophagus enough to work again. Currently, the doctor says his esophagus looks like a silly, curly straw; contorted from the hardening. Like Kamlesh, his esophagus, vocal cords, and diaphragm were affected, along with severe fatigue and depression. The same autoimmune issues that attack your body can also affect the chemical balance in your brain. Gareth was diagnosis'd over 11 years ago and is doing fairly well. He does have the Sjorgren's now, and although he doesn't have the Raynauld's diagnosis, his hands and feet will sometimes blanch out totally white. We deal with each issue as it comes up and he sees a Rheumatologist every 6 months and a Cardiac and Gastric doctor as needed, usually once a year. When he was first diagnosis'd, I thought he would die within 5 years, from all that I read about scleroderma, but he's doing okay. Take care, everyone. Margaret Mom to Gareth, DS/ASD
  2. Lymphocytes

    Hi Clementine, I would also ask your primary care physician for an immune deficiency panel; it registers the IG levels in your blood. Perhaps, you're falling into the Immune deficiency category, too, which is what Gareth has. One can have Autoimmune disease and Immune deficiencies. Ana, Gareth started with internal symptoms, along with all + blood work. His diagnosis is UCTD and he was placed on Plaquenil 6 months after major symptoms started. The Plaquenil really helped his internal issues. Take care, Everyone. Margaret Mom to Gareth, 29 years old, DS/ASD
  3. Jo Frowde: ISN Board of Directors

    Congratulations, Lady!!! You've done so much for all of us!!! Margaret
  4. Our Thanks to Margaret Roof!

    LOL.....I'd be a total basket case without you guys!!! Money well spent and cheaper than a therapist!!! Take care, everyone, Margaret Mom to Gareth, 29 years old, DS/ASD
  5. Mildly positive

    Hi Rachel, I just want to say “hi”and welcome to the forums. I joined 11 years ago when my own son, at age 18, was diagnosed with +positive blood work, esophageal dismotility, and other problems. His diagnosis'd is UCTD - Undifferentiated Connective Tissue disease. He does not have skin issues, and although they say it's not Raynaud's, his whole hands and feet will turn totally white when cold or getting into the shower, etc. His issues are all internal and he was put on Plaquenil 6 months after diagnosis. One point you made was always running a fever for months/years and sinus infections. Gareth is also immune deficient - no Ig G 2/4 to fight bacterial infections and MBL (Mannose Binding Lectin) deficient on top of that. Some medical doctors are finding a correlation between autoimmune diseases and immune deficiencies. The next time you're in to the doctor, ask if they will run an Immunology panel to see if your Ig levels are within normal range. They might also want to check your Vitamin D levels as they may be low in autoimmune diseases. Gareth currently receives IV Ig infusions every 4 weeks, for the past 7 years or so. My heart goes out to you......suffering from these sort of medical issues at the prime of your life. I am happy the animals and horses are your *pick me up*. Take care, everyone. Margaret Mom to Gareth, 29 years old, DS/ASD
  6. Allergies and scleroderma

    Hi Warmheart, Now you have me wondering? I was told some major teaching hospitals are testing IVIg infusions as a treatment for scleroderma. Ig E can be elevated in severe allergies, Lupus or RA patients, too. Is it the cause or affect?!?!? Gareth has been receiving IVIg infusions for over 8 years now for immune deficiencies. I can only wonder what his UCTD would be like without the IV Gammaglobulin - worse? Our body systems are so intertwined and complex and there is so much that is yet to be learned. Take care, everyone. Happy Holidays to those who celebrate at this time of year, Margaret Mom to Gareth, 29 years old, DS/ASD
  7. Hi April, My son had the initial diagnosis of sine scleroderma, from his rheumatologist, based on internal involvement, fatigue, and positive blood work (ANA, anti-RNA Polymerase 1/111, etc). When he saw the scleroderma specialist, he said UCTD because he didn't have other symptoms for scleroderma - namely Raynauld's, nail fold capillary involvement, skin involvement, etc. Needless to say, having the UCTD is not any less severe than having the scleroderma *title*. He was started on Plaquenil initially and that did seem to loosen the esophagus for a while and helped with the fatigue. No matter the name given, symptoms are treated as they develop and progress. You asked for suggestions about other blood work. You already have 2 autoimmune diseases. See if your doctor will do a complete Immunology panel for your IG levels and whether you have low counts for fighting infections. Some doctors are seeing a relationship between immune deficiencies and autoimmune diseases. Gareth receives monthly IV Ig infusions because of his immune deficiencies. IV Ig is also being tested as a treatment for scleroderma in some medical institutions. Take care everyone, Margaret Mom to Gareth, 29 years old, DS/ASD
  8. Hi Everyone, I recently read an article about MBL deficiency and was surprised to find that it is very common and found in 1/30 people. It is usually found in young children these days, but we never knew Gareth had it till he was 20 years old. In Gareth's MBL situation, he is missing one of the three components necessary to fight bacterial infections. Along with the Ig 2/4 deficiencies, he's always been so sickly and now receives the IV Ig infusions each month. They are finding more correlations between immune deficiencies and autoimmune diseases like scleroderma. If you're constantly sick with infections, then perhaps your doctor would do a blood profile to check for immune deficiencies. Take care, everyone. Margaret
  9. Upper Endoscopy/Colonoscopy

    Hi Clementine, My son has an endoscopy every 12-18 months because he needs his esophagus stretched or has stomach pain from an ulcer. I suppose it would depend on your symptoms; he just goes in when he's symptomatic. Take care, Everyone. Margaret Mom to Gareth, 29 years old, DS/ASD .
  10. Hi Angel. I thought I responded to this but guess I never sent it. Gareth has had 3 positive anti-RNA Polymerase !/111, since diagnosed 11 years ago, each one higher than the last. His kidney tests are all normal. His only other positive scleroderma blood work is the ANA, speckled pattern with diffuse cytoplasm. Initially, his Fibrinogen level was very high, too, but that hasn't been tested in years. His only issues are internal, so his diagnosis is UCTD. Take care, Everyone. Margaret Mom to Gareth, 29 years old, DS/ASD
  11. Nailfold capillaroscopy

    Hi Elsa. I am surprised he didn't just do it then. All he had to do was put a drop of oil on your nail and look at it under a microscope or strong magnifying lens!!! Most have this simple test done in the beginning because, unlike your one finger, they start out microscopic and can't be seen readily by unaided eyes. Take care, Everyone. Margaret
  12. Scared for my Mother.

    Good morning Angela, My situation is the opposite, my son, Gareth, was diagnosed 11 yrs ago, at age 18 --- first with sine scleroderma and that was changed to UCTD, after a visit with a scleroderma specialists. Basically, all his blood work was positive, but he had no Raynauld's or skin hardening (just internal hardening). I was a wreck reading all the on-line issues about the fate of scleroderma patients and thought he would die a slow, ugly death. Needless to say, very little of what I read was true or happened. Yes, he does have internal issues from the disease, but he's doing well for the most part. He was put on Plaquenil, and due to immune deficiencies, he receives IV Ig infusions every 4 weeks. This is a great site for up-to-date information and there is always someone to answer questions. Try to get to a specialist if possible or at least a good rheumatologist who knows about this disease. Take care, everyone. Margaret Mom to Gareth, 29 years old, DS/ASD
  13. Fibrillarin

    Hi Newin, Welcome to the forums. I want to tell you that I was in a tele-conference a while ago and the doctor stressed how they are finding a correlation between autoimmune issues and immune deficiencies. You sound like you fall right in that category. He suggested everyone with autoimmune issues have blood work to rule out immune deficiencies, especially in their Ig levels. Perhaps, your primary care doctor or rheumatologist could recommend them, just as a precautionary step. Being treated for any immune deficiency may help offset the autoimmune issues. Take care, everyone Margaret Mom to Gareth, 29 years old, DS/ASD
  14. Hi Everyone, I participated in an interesting teleconference yesterday with an Immunologist, Dr Terry Harville, and want to share some of my notes. As most of you know, Gareth has both autoimmune issues (UCTD, Sjorgrens) and Immune deficiencies (Ig G and MBL deficiencies). He talked about the idea of the two being due to Immune Dysregulation, over active for autoimmune and under active for immune deficiencies. It seems to becoming apparent that autoimmune and immune deficiencies go hand in hand and may be triggered by a similar gene mutation. He said that many people are being treated for autoimmune issues (RA, IBD, Crohen's, etc) but have never been tested for immune deficiencies. He strongly recommended that patients be proactive with their doctors and request immune deficiency blood work (specifically IG profile, etc). One point he made was RA patients being on these new biologics that may increase their risk for infections, particularly fungal infections. Having low IG levels would only make their situation worse, with no one understanding why. Gareth has been on Gammaglobulin infusions for 8 years now and the doctor said that many with autoimmune issues improve with the infusions. His UCTD was diagnosed before the immune deficiencies were diagnosed, even though he had always been a sickly kid with numerous pneumonias, ear/sinus infections. So, if possible, the next time you have a lot of blood work done, ask if the doctor will check your IG levels, if they have never been checked. If one has autoimmune disease, then they should be close to 1000, if not higher. Take care, Everyone. Margaret Mom to Gareth, DS/ASD
  15. Morning, this is quite interesting. I have never heard of ASIA before. Gareth had surgery on his right hip at age 15 and has 5 pins holding it in place. Three years later, he's got + blood work for scleroderma, and is diagnosed with UCTD. I'm wondering now if his unexplained 30 lb weight loss last year was due to his body reacting to the *metal ladder* holding his neck together, put in 1 1/2 years ago? Very interesting. Take care, Everyone, Margaret Mom to Gareth, 29 years old, DS/ASD