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Everything posted by Margaret

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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:
  8. 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:
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. Banners across the top

    Hi , I, too, like the smiles every morning from the banners!!! Thanks, Shelley!!! Take care, Everyone. Margaret
  18. 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
  19. 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
  20. Scleroderma often left undiagnosed

    Hi Everyone, I can't begin to imagine Gareth going 6.7 years before being diagnosed and put on Plaquenil. Thankfully, he was put on it within 9 months. To picture him having many years of esophageal dysmotility, chronic weight loss, no voice, restrictive lung issues/pain, esophageal spasms, fatigue............. blast, I'd go nuts for him!!! Take care, Everyone. Margaret
  21. Seizures and Scleroderma

    Hi Amy , Welcome to the group. I wanted to respond to the seizure question and tell you what happened to my son. He was diagnosed with sine Scleroderma, then switched to UCTD, almost 4 years ago, at the age of 18. One year later, they said he had a seizure (supposedly backed up by a single EEG) and was put on seizure meds. For 18 months, he went through many meds, all causing wicked side affects. He finally went into the hospital and had a week long EEG study done. It found that he was having non-electrical, 'non-epileptic' seizures, also called pseudo seizures. They are not FAKE seizures....as one resident suggested. They don't know what causes them, but they do appear like real absence/partial/even grand mal seizures. Before you submit to any seizure meds, please have the week long study done in an Epilepsy center. Meds do nothing for pseudo seizures. doctors don't know what brings them on or why they happen. Take care, Everyone. Margaret
  22. Hi Erika , Is he saying that you have celiac disease.....allergy to wheat and gluten products? If so, then, yes, untreated CD can cause havoc on the intestinal/immune system. Also.....he saw fungus on your blood cells?!?!? Wouldn't that make you very sick, systemic wise? I hope the treatment works. Take care, Everyone. Margaret
  23. 6 months today!

    Hi Miocean , I, too, am amazed it has been six months already. WOW!!! Glad everything is going well for you. :emoticons-yes: Take care, Everyone. Margaret
  24. New rheumatologist

    <<He insisted that without serological confirmation that no diagnosis of scleroderma can be made.>> Hi Debo , For what it's worth, initially, Gareth HAD the positive blood work along with the esophageal dysmotility, restrictive lung issues, chostochondritis (inflammation), loss of vocal cords, 20 pound weight loss, extreme fatigue, BUT no skin issues. Even though he didn't get the sine scleroderma diagnosis, but the UCTD diagnosis, they started him on Plaquenil. It really doesn't matter as long as they treat your symptoms. Even now, the rheumatologist has added Raynaud's and SICCA to his diagnosis, but still considers it UCTD....not sine scleroderma. Take care, Everyone. Margaret
  25. Maybe a dumb question on Raynaud's

    Hi Everyone, I am at a loss to understand why Gareth only gets white hands/fingers when he gets into the warm shower. He likes the water on the warm/hot side so I know it's not because he's cold. You would think he'd turn white getting out of the shower, but he turns white while in the shower!!! Take care, Everyone. Margaret