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Margaret

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  1. Hi TGK You sound so much like Gareth when he was initially diagnosis'd, at age 18 - UCTD with + scleroderma blood work. He also has immune deficiencies and if you haven't been tested for that, I would strongly suggest it due to the recurring fevers. He has no IGg 2/4, plus a MBL deficiency - both needed to fight bacterial infections. It's one of those *did the chicken come before the egg?* scenarios. He had always been a sickly kid, but did the immune deficiency cause the autoimmune disease? Anyway, he gets IV Ig infusions every 4 weeks to stay healthy. Take care, everyone. Margaret Mom to Gareth, 30 years old, DS/ASD
  2. Hi TGK, I have gone through Gareth's blood work and don't find that specific test. He did have blood work for Fibrinogen levels, when first diagnosis'd, and it was marked High. I'm never sure of what each specific test indicates when High or positive - meaning does high fibrinogen levels always indicate high fibrinogen in all parts of the body? When he had his neck repaired (plate put in for degenerative arthritis - Oct '15) the doctor had to add 3 hrs to the surgery just to chisel away the mess in his throat. He said his carotid artery, esophagus, and airway had congealed into a solid mass that was like chiseling through wood. I'm assuming that is from too much fibrinogen? If you find the answers, please, share with all of us. Take care, everyone, Margaret Mom to Gareth, 30 years old, DS/ASD
  3. Margaret

    My biggest fear.

    Hi everyone - at first, I felt I didn't need to respond to this thread but Heather's post got me rethinking. Heather - I totally understand your fear of dying before your daughter, as it is my biggest fear, too. Gareth is the reason I joined this site back in 2008, when he was first diagnosed with UCTD and very ill. Gareth has Down's syndrome and autism, besides a host of medical issues that keeps me on my toes. No one, but me (MOM) , can care enough for him or understand his speech/ feelings/pain/etc. I've always joked that I am ready to die any day - as long as Gareth is with me. He did move into a group home several years ago (his choice) but to this day, I still take charge of all doctor appointments and medical issues. If he's hurting or feeling off, he calls me to come get him!! Staff is totally supportive and understands. Sometimes, he *milks it* for all it's worth, but I don't mind. Take care, everyone, Margaret Mom to Gareth, 30 years old, DS/ASD
  4. Hi Jo - wow - I have lots of reading to catch up on. Like the tele-conference last year, they are finding out that so much of the autoimmune diseases are intertwined with the immune system/deficiencies. Thank you, for taking the time to compile all this together. Take care, Everyone. Margaret Mom to Gareth, 29 years old, DS/ASD
  5. Morning Allyson, When Gareth was first diagnosed at age 18, his complaints were his esophagus, major fatigue, and chest/voice. His pediatric gastro doctor is the one who ordered the Sclero panel for blood work when his food swallowing study showed his esophagus was hardened. He only had internal issues with his esophagus, vocal cords, diaphragm and the doctor called it sine scleroderma. The Scleroderma specialist, in Pittsburgh, said it was Undifferentiated Connective Tissue Disease (UCTD) because he had no skin issues, capillary damage, or Raynaud's. UCTD can be just as damaging as scleroderma, although I don't understand what the difference is between it and sine scleroderma. He was placed on Plaquenil 6 months after initial diagnosis and, after about 3 months, he told me his *food tube* was working again. The fact that he was male, 18 years old, and had no other CREST symptoms, threw everyone off. Over the past 11 years, he has developed degenerative arthritis and needed surgery for that in his neck. He is showing signs of progressive disease, so we are watching that closely. He needs his esophagus stretched every 12-18 months and the doctor says it looks like a silly, curly straw because it's so contorted by the hardening. He does have asthma; not sure if that is from the diaphragm issues (Chostrocondritis) or not. When he does talk, he stutters badly and that is probably from the initial hardening of the vocal cords. I am constantly telling him to *take a deep breath* so he can talk without stuttering so badly. Internal hardening around the gallbladder caused that to flare up and it was removed. Blood work - has your daughter been tested for immune deficiencies? Some doctors are finding a correlation between autoimmune and immune deficiencies. Gareth falls into that category, too. At age 20, we found out he has Mannose-binding lectin (MBL) deficiency and IG 2/4 deficiencies, thus the inability to fight bacterial infections. He had always been a sickly kid but was never tested. I always wonder if the immune deficiencies led to the autoimmune issues, but his grandfather had rheumatoid arthritis, so that shoots that idea down! He started receiving Gamma globulin infusions shortly after diagnosis and continues to this day, every 4 weeks, religiously. He had a Power Port installed last year because his veins are shot in his arms, again - autoimmune related or immune related? We take each event as it comes and he gets patched up and sent on his way. He has a fantastic group of specialists and nurses at the local hospital know us well!!! Our bodies are a very complicated piece of machinery that is so finely tuned; once it gets out of whack, anything can go wrong. I realize dealing with a 5 years old child is completely different that an 18 years old, but I hope she gets the best of care with considerate doctors. You're in my thoughts. Take care, everyone. Margaret
  6. Margaret

    Test results.

    Morning, anything over 1 is considered positive, but it doesn't say anything about the range. Many on this site have positive blood work with no signs of scleroderma. Others have full blown affects of scleroderma and have negative blood work. If you have signs of scleroderma, then a trip to a Rheumatologist would be recommended. Take care, Everyone. Margaret Mom to Gareth, 29 years old, DS/ASD
  7. Good morning. I read your letter with much interest, especially the pain your daughter has in her legs. My son was diagnosed with autoimmune issues at age 18 and suffered for years from leg pain. Like your daughter, he would wake up at night asking for pain meds. During the days, he couldn't walk very far and needed a wheel chair for long distances. Finally, I got a doctor to X-ray his neck - not his hips, knees, ankles like they were all focusing on. It turned out that he had severe degenerative arthritis in the cervical spine area, impinging on the spinal cord. Surgical repair took away the pain immediately. This is just a suggestion - I'm not a doctor. Also, the discomfort in her throat. My son's diagnosis came because of esophageal dismotility. His food wouldn't go down, he told me it was stuck. To this day, he has to wash his meals down with lots of liquids. A simple swallowing test will show the food sitting in the esophagus if dismotility is the problem. I feel your anguish. I hope you find a doctor to help. Take care, everyone, Margaret
  8. Hi Ana. Just being on a low dose or 1/2 dose of an anti-depressant will help with the anxiety and the *not knowing*. You don't have to see a Psychiatrist, per se, even your local primary care physician could try a med on you. If you feel it's not helping, then you can try another med or go off them. One thing I have learned over the years, because of Gareth, is that there are a lot of anti-depressant drugs for the simple reason that each is tweaked to help the chemicals in the brain. Gareth went into depression after initial diagnosis and the psych doctor said it is normal with any autoimmune disease; your brain is part of your body! It's the *what if* that people get consumed with thinking about and that's not a good scenario to play over and over and over again in your mind. You can go off anti-depressants just as easily as you can try them if you don't feel they are helping. Take care, everyone, Margaret
  9. 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
  10. Margaret

    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
  11. Margaret

    Jo Frowde: ISN Board of Directors

    Congratulations, Lady!!! You've done so much for all of us!!! Margaret
  12. Margaret

    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
  13. Margaret

    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
  14. Margaret

    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
  15. 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
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