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Everything posted by Margaret

  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
  16. Happy, happy birthday!!! I hope you were able to enjoy some little fun yesterday - maybe a nice meal out at a favorite restaurant or your son made that favorite dinner? Take care; we're all thinking of you. Margaret.
  17. Hey lady - I'm curious as to whether your doctors have ever suggested you trying IV Ig infusions? Gareth's rheumatologist was straight out of Johns' Hopkins scleroderma center and said that is the latest trial for scleroderma. It got brought up a couple of years ago, when he was having esophagus issues. Her comment was *he's already getting IV Ig infusions for his immunodeficiency. IV Ig would be the next step if the Plaquenil stopped working completely.* Curious as to if any others have been recommended IV Ig therapy for scleroderma. It may be only a trial test at Hopkins, too
  18. Hi Janet - one can feel your pain and frustration through your post. None of us are doctors but we do have life experiences behind us. My own son is the reason I am on this site and, like you, he had all the positive blood work, but only internal involvement - no skin issues or Raynaud’s. He did suffer from severe depression at the onset and the doctor told me that the same internal process that is wrecking havoc inside your body also affects the chemicals in your brain. Your brain is a finely tuned machine - relying on the rest of the body for support, especially your stomach/
  19. Hi Everyone. I came across this article "Take a Deep Breath" in my Discover magazine. He talks about doing studies on scleroderma patients, how deep breathing increases saliva, which is beneficial to the body on many aspects we are just beginning to understand. I did google *Pranayama breathing* and it's not that hard to do. There's even You Tube videos that teach you. Take care, everyone Margaret Mom to Gareth, 30 years old, DS/ASD
  20. Good morning, Claire My son was put on Plaquenil, as a first medication, and it did wonders. He's been on it for over 12 years - same dosage, 200 mg/day. Any medication, whether all natural or man-made, can cause side affects. Plaquenil is an anti-malaria drug that somehow *jump starts* the immune system to respond correctly. I'm not a doctor, so very limited understanding of the process!! There are many people, on this site, using this med and have had good results. It may take several months before observing benefits, though. Take care, everyone, Margaret
  21. LOL - I'm sure living in NW Washington doesn't help any!!! You guys have had a horrible winter - nothing but rain or snow, right? I did buy Gareth one of the sunlamps, for him to use when sitting and watching TV - I wouldn't know if it helps him any, but I like using it!!! M
  22. Oh, Barefut - to fill so bummed on Valentine's day. I wish I was near to you to give you a hug and help out. Gareth, too, suffers from depression, brought on by the scleroderma. Perhaps, it's time for a change in depression meds? I once had a doctor tell me the reason there are so many depression meds is because many are tweaked, just a notch, for each of the chemical changes that may be occurring in the brain. Relax and be at peace with your *I don't care day* Margaret
  23. Hi everyone, I want to wish all my scleroderma family a wonderful New Year and thank you for the support through this past year. May your pains be less this year and you find that perfect med, along with that perfect doctor, to ease the symptoms. I think of all of you whenever Gareth has an issue/flair; it is so reassuring knowing that you're all out there should I need help/advice. Take care and enjoy the day, Margaret Mom to Gareth, 30 years old, DS/ASD
  24. Good morning, the same thing happened with my son and his blood work. If you read many of the threads throughout the forum, there are people with full blown scleroderma symptoms and negative blood work and visa versa. Many times, it will depend on the lab where the blood is sent. Gareth has had 3 + anti-RNA 111 from one lab in Ca, but it was negative from the lab the specialist uses. The important thing is being treated for the symptoms, which you said you were. Gareth's original doctors said sine scleroderma but the specialist says UCTD. Either way, he's being treating for th
  25. Hi Cathy & Phyllis I want to add that having UCTD (Undifferentiated connective tissue disease) is no less severe than having CREST or scleroderma. The hardening inside may flare up at anytime and cause issues. Gareth's esophagus looks like a twisted curly straw and needs stretching when the swallowing becomes too hard and food sticks there. When he needed surgery to repair his neck (he needed a *ladder* installed to repair degenerative arthritis) it took the surgeon an extra 3 hrs to chisel through the *wood* encircling his trachea, esophagus, and carotid artery. The intern
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