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Margaret

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About Margaret

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    Pennsylvania

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  1. Hi everyone, Gareth got his second shot on Wed and is doing fine today (Sat). He did complain of a headache and had a temp of 99.8 Thurs night and Friday morning. Tylenol took care of both each time. I am getting my second shot today - such a overwhelming relief!! Take care, everyone. Margaret
  2. Good morning, Gareth has had his first shot, the Moderna vaccine, the end of January. He will get the second Feb 24th. He did have a fever and headache on the second day, but Tylenol took care of it. Take care, everyone. Margaret
  3. Good morning, Glenn.....losing his voice was one of the first signs my son experienced with his initial diagnosis. The doctor said the vocal cords had hardened, like his esophagus. He was put on Plaquenil shortly after diagnosis and, after 2-3 months, his voice was back. Is he on any therapy for scleroderma? Take care, everyone. Margaret Mom to Gareth, 32 years old, DS/ASD
  4. Morning Jo.....this all sounds very good but I suppose people like Gareth need to ask if they want a + diagnosis by bloodwork, which Gareth has, or a + diagnosis on symptoms? He only has the esophageal dismotility and Raynaud's. Take care, everyone. Margaret
  5. Hi Jo.....I did check his meds *adverse affects* and none list degenerative effects on bone. He's not on that many.....Plaquenil, Prilosec, Vit D, and Singular. Besides his spine degenerating, he has bone on bone in his left hip, which he doesn't complain about at all. I blame a lot of it on the autism.....not knowing pain like we do and not being able to communicate the pain level/area when he does. Stay safe, Margaret
  6. Hi everyone .... I hope you're all healthy and staying Covid free. It was a very quiet holiday season for our home! I was wondering if anyone has degenerative arthritis, in their spines, due to their SS or UDCT? Gareth had a CT and MRI last week due to severe back pain. I thought it could be a kidney stone due to the pain area and a history in my family. The doctor said its severe degenerative arthritis in the middle of his back. Five years ago, he had a *ladder* put in his neck due to degenerative arthritis. The doctor said the cause was his UCTD. I can find no inf
  7. Morning...welcome to the group. It's hard to believe but Gareth has been receiving IVIg infusions since 2011. He was diagnosis'd with UCTD in the fall of 2007 (age 18) - esophageal dysmotility, + ANA for scleroderma and + anti-RNA Polymerase111. He had always been a sickly child and infections got much worse after his diagnosis. It's then, that the doctors found out he had and MBL deficiency and an IG 2/4 deficiency, Ig 1/3 extremely low. Your Ig levels are what determine how well your body fights off bacterial (Ig 2/4) and viral (Ig 1/3) infections. For the first y
  8. Morning - very useful information as Gareth has been on Plaquenil for 13 years. I was silently hoping it would offer some protection as he also has immune deficiencies, too. Stay safe and healthy, everyone. Margaret Mom to Gareth, 32 years old, DS/ASD
  9. Good morning, first off, we are not doctors and are not qualified to answer many of your questions. I'm glad you're seeing a doctor and hope it's a scleroderma specialist. Your history indicates a lot of unusual medical events that could indicate other illnesses. What I do want to say is that the diagnosis of scleroderma is not a death sentence; there are new medications to slow the progression and treat many of the symptoms. So many people on this site have had this disease for 10, 20 + years. My own son, diagnosed at age 18, will be 32 next month. He's doing very well and h
  10. Morning Ronald.....I'm in PA, USA, and have been under a *stay at home* policy going on the 3rd week now. At first, it was hard, but we've gotten into a routine. I am the one doing the shopping, etc, since I'm the *youngest* (at 65 ) - hubby is on statins & has blood issues, my sweet aunt Tootie is almost 90, and Gareth has the UCTD and Immune deficiencies. My hope is that since Gareth has been on Plaquenil since he was diagnosis'd, age 18, that he is going to be okay. I had to pharmacy shop this past week to find one that could replace it for the next 30 days!!! That's scary!!!
  11. Morning Ronald, I don't have scleroderma but do get awful, swollen sores next to the nails. An antibiotic ointment and bandaid (for protection) seems to help with the pain and infection. Some takes day or a week to heal. Take care, everyone. Margaret
  12. Hi everyone, I am scared about this whole situation, not so much for me (even though I'm listed as OLD now!!!) but for Gareth. Along with the UCTD, he's got the immune deficiencies and isn't due for his monthly IVIg till this coming Thursday. I know his immune system is running on empty. Everything has been shut down in our area for the past 10 days, he is with us, but he doesn't understand the situation. I keep telling him people are getting sick - all over the world. He's been to Italy, England and Ireland, so he sees how they are experiencing the same *stay at home* procedures.
  13. Hi Jeannie.....it was 13 years ago this Nov, that we were told Gareth's esophagus had hardened and he had the + blood work for something called scleroderma. As most, I totally freaked out over Dr Google reports and figured he would die in a few years. Relatively speaking, though, he's doing pretty good and enjoys life. He has had his setbacks, especially when they have to do surgeries, etc. He has two part time jobs, lives in a group home with 2 other great guys, and LOVES to travel......road trips, cruises, or flying off to some other country. He's involved in Special Olympics, to the be
  14. Hi Michelle.....welcome to the forums, even though no one wants to be here!!! My son was diagnosis'd, at age 18, because of esophageal testing and + blood work. At the time, that was his main complaint. He was later diagnosis'd with UCTD, Undifferentiated connective tissue disease, and given the drug, Plaquenil. He's now 13 years in to the disease and it rarely causes major issues. There have been so many medical advancements that reading the web can cause unnecessary anxiety. Finding a good rheumatologist/specialist is top priority. Reduce the stress/anxiety is another top priority.
  15. Hi Quiltfairy - I replied earlier this morning but it didn't go through. I'm glad you're okay and didn't hurt yourself. I fell back on my butt a week ago while weeding. Needless to say, the first thing I did was look around to see if anyone saw me do it!!! I have no medical condition - just purely uncoordinated. Take care, everyone. Margaret
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