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Margaret

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About Margaret

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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