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Margaret

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Everything posted by Margaret

  1. 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 best he can, and enjoys winning ribbons & metals. We read his pain and fatigue level by the facial expression and brow ridges!!! He's good at taking meds, so the pain is brought under control. This site has truly been a life saver, especially in the beginning years when fear and ignorance was sky high!!! Take care, everyone. Margaret Mom to Gareth, 31 years old, DS/ASD
  2. 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. Read the updated medical articles on this site......not random web articles that stress you'll turn to *rock* and die a horrible death within a couple of years!!! Take care, everyone. Margaret Mom to Gareth, DS/ASD
  3. 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
  4. 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.
  5. 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? Take care, everyone. Margaret
  6. 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/gut. He was put on a low dose SSRI and it has helped greatly. You do have a reason to live. Also, the first Rheumatologist said sine scleroderma, but the specialist rheumatologist said UCTD - Undifferentiated connective tissue disease. This does not mean you're not suffering from internal issues and it can be just as damaging internally as sine scleroderma. Gareth needs his esophagus stretched and opened regularly; it looks like a curly straw from the fibrosis and hardening. It took an additional 2-3 hrs to operate on his neck because the doctor had to *chisel his way through wood* - his esophagus, throat, and carotid artery had congealed into one hard mass. He was put on an anti-malaria drug (Plaquenil) when first diagnosed and has been on it for almost 13 years now. It did help greatly on softening the esophagus and making food go down easier. The doctor said it was a med to *jump start the immune system*, which seems contradictory to what you would want, but it works, and many on this site take it. Perhaps, you can go back to one of the doctors and ask for some trial meds and SSRI and plaquenil. Go in educated on the disease and how these meds may help. Give them this site information - it has a huge library of up to date medical information. And above all - you have a new family of friends here that you can talk to and will offer support. Take care, everyone. Margaret Mom to Gareth, 31y/o, DS/ASD
  7. 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
  8. 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 Mom to Gareth, 30 years old, DS/ASD
  9. 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
  10. 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
  11. 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
  12. 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 the symptoms and both diseases can cause extensive medical issues. Take care, everyone. Margaret Mom to Gareth, 30 years old, DS/ASD
  13. 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 internal changes aren't apparent till a doctor gets in there to work!!! I know it's easy to say, but try to stay optimistic and trudge through the flares should one arise. Take care, Everyone, Margaret
  14. Hi Phyllis, Welcome to the forum and sorry to hear of your positive blood work, along with various symptoms. I can only speak for myself, when my son was diagnosed, but most readings on the web were very depressing and negative. I assumed he would die within a few years and that was 12 years ago, this month! There are many others on this forum who have had it for 20, 30+ years. Gareth had all the positive blood works, too, but only had internal issues - esophageal dismotility being the culprit that brought on the blood tests. He's been on Plaquenil for 12 years and is doing pretty good, with only occasional issues. Stress can play a factor in the disease, too, so try to keep that in mind. Take care, everyone. Margaret Mom to Gareth, 30 years old, DS/ASD
  15. Hi, I had Gareth in to Pittsburgh, too!! He saw Dr Metzger. He said that because he had no skin issues, Raynauld's, or capillary damage that it wasn't sine scleroderma, but UCTD, even though he had the + blood work for scleroderma. I've learned through the years that they treat the symptoms; not worrying about the *name*. Gareth's issues have always been internal. We're in State College, Pa. Take care, everyone. Margaret
  16. Hi Tracy, Gareth had a + ANA (speckled pattern) and + anti-RNA Polymerase 1/111. His initial diagnosis of sine scleroderma was changed to UCTD (Undifferentiated connective tissue disease) by the scleroderma specialist. It's still autoimmune issues - just a different name. Margaret
  17. Hi Edolye, My son was diagnosis'd, at age 18, with sine scleroderma because of positive blood work, esophageal dismotility, extreme fatigue, major depression, and chostrochondritis. The specialist said he had Undifferentiated Connective tissue disease (UCTD) and he was placed on Plaquenil, which really helped with his symptoms and fatigue issues. My concern for your daughter is her shoulder and knee pain - have they X-rayed her neck? We found out, at age 27, that Gareth also had degenerative arthritis and his vertebrae between C3/4 - CC7/8 had disintegrated and was pressing on his spinal cord. He was pretty much wheelchair bound for any sort of walking distances and no doctor even thought to x-ray his neck! It happened because I asked my primary care physician to order the X-ray of the neck to rule out C1/2 instability, found in kids with Down's Syndrome (DS). I have learned a lot over the past 12 years and one major factor is that autoimmune diseases have a mind of their own and don't follow the rules and guidelines they're thrown in to by doctors!!! Treat the symptoms your daughter does have now and be an advocate for *off the wall* ideas/problems. Take care, everyone, Margaret Mom to Gareth, 30 years old, DS/ASD
  18. Congratulations, Jo. This site is such an asset to so many people and your information is always appreciated and very valuable to so many. Margaret
  19. Hi Creleon Welcome to the forums and thank you for being such a caring, big sister. I joined 12 years ago when my son was diagnosed at age 18 and read it's a disease *that turns you to stone*. I thought my son would die an early, painful death. The internet is full of horror stories so be sure to rely on a good doctor and the prescribe treatments. My son is doing quite well and each road bump is treated or taken care of. There are medications these days that make life easier. Take care, everyone. Margaret Mom to Gareth, 30 years old, DS/ASD
  20. Hi Everyone, I just wanted to share with everyone that Gareth has been so healthy, for over a year now, that I'm waiting for the *time bomb* to drop!!! He was sick on Wednesday the day of his IVIg treatment. We went in for the treatment but because of his gut ache, we walked out and over to the primary care physician. Well, because of his extensive medical background, they always run a series of blood work on him. Everything came back normal...CBC, liver, and chem panels...all normal!!! Doctor said it was just a viral bug going around and the next day he was fine and happy. Take care, everyone. Margaret Mom to Gareth, 30 years old, DS/ASD
  21. Hi Beckybee; welcome to the forums. My son was initially diagnosed with sine scleroderma, but that was changed to Undifferentiated Connective Tissue Disease ( UCTD) by the Sclero specialist. He had positive blood work and internal involvement, but no skin, Raynaud's or capillary involvement. His main problems were his vocal cords, esophagus, diaphragm/lungs and major fatigue. He was put on plaquenil and has been on that for eleven years now, with no problems. Take care, everyone. Margaret Mom to Gareth, 30 years old, DS/ASD
  22. 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
  23. 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
  24. 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
  25. 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
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