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Everything posted by Margaret

  1. Margaret

    Let's Party! Celebrate ISN Anniversaries Today!

    Hi , I want to come, too!!! I'll bring my favorite wine -- appropriately called *Mommy's Time Out*!!! Seriously though, it's really good wine!!! I wouldn't have survived the past 4 years without all of you. Thanks!!! Oh, for food.....how about a dish of Mexican chicken, salsa and rice? Take care, Everyone. Margaret PS...Shelley....I need an in depth refresher course on *Avatars*. I tried to find it myself.......got lost!!! :wacko:
  2. Margaret

    Hair Thinning and loss

    Hi Lynn , I don't have sclero or any other autoimmune issues (my son does) but when my hair started falling out 2 years ago, the doctor suggested some over-the-counter supplements. You can send me a PM for what I took, if you want. It took 3 months before I really noticed my hair coming back in. Like you, I was thinning on the front sides and a spot at the back. Gareth's hair has started thinning since he went on thyroid meds --- almost 2 years now. Take care, Everyone. Margaret
  3. Margaret

    Tennis elbow now

    Hi Winnie , Your post caught my eye because, two weeks ago, I was in the doctor's office complaining of a very sore elbow that was getting progressively worse. I *told* her MY diagnosed of RA (Dad had that) or Gout (mom has that). :unsure: Turns out, after an X-ray, I have a bone spur developing in my elbow. <_< Bone spurs are calcium growths and Sclero patients may have calcinosis. Perhaps, there's a connection? Did you have an X-ray? Just curious. Take care, Everyone. Margaret
  4. Margaret

    Mother of Katie, 8

    Hi Sacha , I am the Mom of a son who was diagnosed with sine Scleroderma/UCTD at age 18. He started with the positive blood work, esophageal dismotility, 20# wt loss, restrictive lung issues, loss of vocal cords, autoimmune induced depression, and numerous other problems. I had never heard of Scleroderma till Gareth was diagnosed. He had no skin issues or Raynaud's at the time, so the doctors were a bit perplexed......also, he was a male and only 18 years old. Needless to say, his senior year in HS was not fun. He was started on Plaquenil 9 months after the initial diagnosis. He has never been on Prednisone, except for a severe bout of pneumonia 2 years ago. Flash forward 4 years. and he's doing fairly well. He's regained the weight and, then some, and his esophagus is *working* again. He developed Raynaud's last Spring but it's not too bad. He's also developed the dry mouth and dry eyes, but doesn't complain about it. Keep posting and asking questions here as everyone is so nice, informative, and they are a wealth of information. Everyone here has kept me sane the past 4 years!!! Take care, Everyone. Margaret
  5. Margaret

    Feeling really down tonight

    Hi Mopsygirl , I realize I am coming in late on this discussion but wanted to add to the great advice already given. My son went into a severe, Autoimmune induced depression shortly after being diagnosed. The Psych doctor told me that the same autoimmune issues that attack the body affect the chemicals in the brain. You may have no choice, meaning that a therapist alone won't help, but to go on medication to prevent severe depression. I was also told that each depression med only works on 10-15% of the population. <_< That is why there are so many of them out there. Each one is tweeked a tad differently because our brains our so chemically balanced. I sure hope you start feeling better soon. Take care, Everyone. Margaret
  6. Margaret

    Combination of RXs

    Hi LC , I'm am happy to hear your son is doing well. :emoticons-yes: My son started with symptoms of sine Sclero/UCTD at age 18 and was put on Plaquenil. He's doing quite well now, 4 years later, with only the Plaquenil and Prilosec combo. He needs the Prilosec because he still has some esophageal dysmotility. He had such a horrible reaction to Prednisone (for pneumonia) that I doubt I would ever put him on that drug again. Take care, Everyone. Margaret
  7. Margaret

    Update on sclero-soldier

    Hi Emmi , I remember you!!! I saw your heading *Sclero-soldier* and thought "WHAT" ?!?!? Congratulations!!! :emoticons-yes: You have been so busy, weren't you just on holiday in the Mediterranean?!?!? Do you still dance? My son, Gareth, is doing quite well. It's been 4 years now. Do take care and keep us all posted of your happenings. Margaret
  8. Margaret

    Happy Thanksgiving

    Hi Everyone, I want to wish all my American cyber friends and their families a relaxing, Happy Thanksgiving. We've just finished our big turkey dinner and Gareth (4 years into this journey) is healthy enough to enjoy it all.....a little too much!!! :happy-day: Take care, Everyone. Margaret
  9. Hi, Everyone , On the flip side, though, you have someone like Gareth who does have the old positive ANA (1996), speckeled pattern, diffuse cytoplasm and still no Scleroderma diagnosis because he doesn't have the skin issues....only internal. He's also got the + AntiRNA Polymerase 1/111. Take care, Everyone. Margaret
  10. Margaret

    Crumbling tooth

    Hi Everyone, This is interesting since Gareth has the GERD, esophageal dismotility, and the dry mouth, but I don't know what meds would dry out his mouth. <_< Is there a listing anywhere? Is Plaquenil or Prilosec on that list? That may be why the doctor said his UCTD was also to blame....due to the meds. Take care, Everyone. Margaret
  11. Margaret

    Crumbling tooth

    Hi Summer , Last Jan, my son came to me because his bottom teeth were *sharp*. I ran my fingers over the bottom, front 4 and, needless to say, they were jagged like a saw. The dentist ground them down smooth and said it was from his dry mouth/UCTD. It really surprised me. Take care, Everyone. Margaret
  12. Margaret

    Too much stomach pain

    Hi NorthStarHope , You haven't posted lately. How's your sister doing? Is she still in the hospital or home recovering? How are you holding up? Take care, Everyone. Margaret
  13. Hi Everyone, WOW....what more can I say. You all have been here for me from the beginning. :VeryHappy: May all of you have a :happy-day: and gentle :emoticon-hug: to all of you. Take care, Everyone. Margaret :happy-day:
  14. Margaret

    Too much stomach pain

    NorthStarHope , Thank you for the happy news tonight!!! So glad your sis is feeling better. I will continue to keep you both in my thoughts. Take care, Everyone. Margaret :emoticons-yes:
  15. Margaret

    Too much stomach pain

    Hi Northstarhope , My first impression was severe esophageal spasms. Have they tried nitro tablets under the tongue? Gareth had them when his sclero first hit and he would complain of severe pain/heart attack. Has the stomach hardened....I don't even know if that is possible!!! I hate hearing that she is in so much pain and they don't know what the cause it. Where is the *Dr House* for that hospital?!?!? How about pancreatic/bile duct constrictions? Take care, Everyone. Margaret
  16. Margaret

    11 hospital visits in two months!

    Hi NorthStarHope , I am sorry to read about your sister and will keep all of you in my thoughts. Gareth had fluid around his lungs and heart 2 years ago, and thankfully, it hasn't reaccurred. :emoticon-hug: Take care, Everyone. Margaret
  17. Margaret

    Hair loss, help!

    Hi Patty , I have been hesitant to reply to this because I don't have Scleroderma or any autoimmune issues. I did experience my own fine, thin hair falling out (in gobs) several years ago, though, and was told it was due to stress. Someone recommended OTC Gelatin capsules and my primary care physician recommended OTC Biotin. By using both of them, my hair has returned and is healthy again. You could try that combo and see if it works. I have noticed that since Gareth started Synthroid for his hypothyroidism, that his thick hair is thinning quite a bit. I'm not sure if I will start him on supplements, though. Take care, Everyone. Margaret
  18. Margaret

    Four years!

    Hi Jeannie , Your post brought a big smile today. I was just thinking last week, that it will be 4 years, this month, since they found Gareth's esophageal dismotility and he's doing quite well these days!!! All the horrors I read about never came to fruition.....thanks to the Plaquenil. I hope you can go out and enjoy a delightful dinner/evening. And, since Gareth won't eat chocolate, I will be more than happy to take his box!!! :happy-day: Take care, Everyone. Margaret
  19. Margaret

    Just SO many questions!

    Hi LC , Welcome to the forums. I am Mom to a son who was diagnosed at age 18 (now 22 years old) with sine Scleroderma, and later, switched to UCTD. Unlike your son, my kid had all internal involvement and no skin issues. His started with the esophageal dismotility, restrictive lung issues, loss of vocal cords, 20 lb. weight loss, and positive blood work, etc. It wasn't until last winter that he showed signs of Raynaud's and SICCA (dry eyes and dry mouth). He was started on Plaquenil nine months after the initial diagnosis and, within 3 months, his esophagus was working, voice was back, breathing was normal, and he was doing okay. My son also got something called autoimmune induced depression, so please, watch out for that. The same autoimmune problems attacking the body can also affect the brain chemicals. This is a fantastic group of people who held my hand and walked with me through the first year of his diagnosis. If you even have any questions, they are the ones to ask. Take care, Everyone. Margaret
  20. Margaret

    Undifferentiated Sclero?

    Hi Mickikid , My son was diagnosed 4 years ago with sine Scleroderma (by the gastro doctor and primary care physician) and it was later changed to UCTD (by the rheumatologist) because he had no skin issues - all internal involvement. He was started on Plaquenil and within 3 months his symptoms subsided. He's been on a pretty level road since then. No matter what it's called, get treated for the symptoms.....not the name. Take care, Everyone. Margaret
  21. Margaret

    Celebrating for Different Reasons

    Hi Miocean , I'm chiming in a bit late but want to say *congratulations* also. I like happy news and yours is definitely *up there* when it comes to good news!!! Take care, Everyone. :happy-day: Margaret
  22. Margaret

    UCTD Diagnosis

    Hi Chimama , Four years ago, my son, at age 18, started with an unexplained 20# wt loss, esophageal dismotility, loss of voice, major fatigue, restrictive lung issues, esophageal spasms, + ANA, speckled pattern, and + Anti-RNA Polymerase 1/111. He had no skin issues, Raynaud's, or nailfold capillary irregularities at that time. His gastro doctor and ped concluded it was sine Scleroderma. After going to a rheumatologist, though, they called it UCTD because he didn't have any skin issues or Raynaud's. They did start him on Plaquenil 9 months later and his internal issues got better. Last winter, though, he started showing signs of Raynaud's and dry mouth/eyes. He's still UCTD but his new rheumatologist says they treat the symptoms....not the name. His major problem these days is the chronic fatigue. Take care, Everyone. Margaret
  23. Margaret

    Banners across the top

    Hi , I, too, like the smiles every morning from the banners!!! Thanks, Shelley!!! Take care, Everyone. Margaret
  24. Margaret

    Diagnosed today,with a question mark

    Hi Grammycats , Welcome to the group. My son started out with esophageal dysmotility as his major issue, too. He's doing okay now that he was put on Plaquenil. Hopefully, the other doctor (a rheumatologist?) will help you. As for your name, Grammycats, do you have lots of cats? I'm the crazy cat lady in our family; we have 6 inside cats and 1 feral cat, outside, that I feed every night. Take care, Everyone. Margaret
  25. Margaret

    Depression: The Precursor of Disease

    HI Janey , Depression is one of the biggest *issues* that we have been dealing with, in Gareth, since his diagnosis. We were just told to increase his Vit D level, again, and buy Full Spectrum lights for throughout the house. Take care, Everyone. Margaret