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Everything posted by Margaret

  1. Hi Everyone, It's good reading these reports because Gareth's rheumatologist wants to start him on Plaquenil when we see him again on 4/26. Take care, Everyone. Margaret
  2. Hi Irene , The older I get, the more white spots I find on my arms & legs and I don't have any autoimmune disease. They always look like I splashed bleach on myself. They aren't raised.....just tiny white spots of varying sizes scattered about. Take care, Everyone. Margaret
  3. Hi, Everyone ~~~~ Gareth has been using a C-Pap machine for over 3 years with little difficulty. He goes back and forth between the nasal plugs and the full mask. Unfortunately, it has done nothing for his fatigue the past 6 months. Take care, Everyone. Margaret
  4. Hi Sherrill , I have a TENS unit for my back spasms. Too bad it didn't say where to place the electrodes........I could try it on Gareth. Will have to ask his Gastro doctor in 2 weeks. Take care, Everyone. Margaret
  5. Morning Everyone, Once again, I want to thank everyone for your honesty in expressing how you feel. I copied and e-mailed (minus names) many of the responces about fatigue to Gareth's aide, teachers, and rheumatologist. I told his rheumatologist this has been Gareth for 6 months now and I never had a clue that the fatigue could be so debilitating. His rheumatologist agreed and said t could be a major problem with sclero. Gee.....why didn't he ever say so!!! I also expressed my frustration with him that no one is taking charge of Gareth's situation.....everyone is waiting for Dr M to get back with blood results and that has been a month now. Haven't heard back from that e-mail!!! Anyways, I guess many of you have gone years without a definitive diagnosis, so I should not whine too loudly about the lack of one for Gareth the past 6 months. Once again................thank you for helping me understand what gareth is going through. I hope everyone has a fairly good day, Margaret
  6. Hi Jennifer , Gareth sat around all day in his recliner and did absolutely NOTHING!!! No TV, no reading, no music, no church......nothing. He had a nap from 3-4:30 and went to bed at 7:15. Is that the kind of fatigue you are talking about? I just read where Sweet said she was put on Plaquenil for fatigue. Maybe I should ask G's doctor about that. I asked him all day if he hurt or if he was sick and he would say 'no.' Take care, Everyone. Margaret
  7. Hi Celia , Gareth has been complaing that his collar bone hurts (where is joins the sternum) for months and no one can connect it to anything. Is that what you are feeling....sore bones or the tissue around the sternum? Just curious. Margaret
  8. Hi Celia , Gareth does not have Raynaud's symptoms......yet. He's got esophageal and lung issues and positive blood work for scleroderma. Take care, Everyone. Margaret
  9. Hi Hope , I just wanted to say 'hello' and welcome to the group. My situation is reversed from yours. I am the Mom and my son, who is an 18 years old senior, was diagnosed last fall with probable sine Scleroderma. I, too, was very depressed when reading all the reports on sclero but with all the new medical information and meds, etc., I am very optimistic about him having a fairly long life. Take care, Everyone. Margaret
  10. <<I guess my heart got a little jealous of my son's murmur and had to have one too. News to me as my gastro doctor told me offhandedly, assuming I already knew I guess. He just says to his intern, "Yea, probably the scleroderma going to work there" >> Morning Barefut , This is interesting because Gareth had his echo 2 weeks ago and the cardiologist found a heart murmur on Gareth that wasn't detected before. He said it wasn't related to Scleroderma. I know they found one in me 5 years ago.....guess it is fairly common. Good luck with the foloowup and keep us posted. Take care, Everyone. Margaret
  11. Hi Carolynv , I am so glad your son is getting help. I am a Mom with a son diagnosed last fall with sine Scleroderma.....only he is 18 years old. I have learned so much from these folks. Take care, Everyone. Margaret
  12. Barefut , You're such a 'case'!!! How's the kiddo? Margaret
  13. Hi, Everyone....Once again, I need some help in figuring out what Gareth is feeling. His PFT showed mild restrictive lung disease. Today in gym class, his aide said he ran very little around the track and tired easily. I am getting the feeling that none of his doctors want to take control of him till we hear back from Dr Medsger.....that will be 3 weeks tomorrow. For those of you with it painful when you run/exercise? His aide wanted to know if there should be restrictions for PE. Is it a tightning feeling, hurting feeling, breathless feeling.... I don't have a clue!!! Thank you and take care, Everyone. Margaret
  14. <<Has Gareth had any lung function tests or x-rays or a CT? >> Hi, Everyone.....thank you for your help in explaining what you are feeling. Janey....Gareth had a CT scan and X-ray done in Dec. Nothing showed up as far as fibrosis, etc. The Pul fuct test done in Feb showed the 'mild restrictive lung disease.' I don't know if RLD is the same as ILD. I am wondering if his lung issues have progressed since Dec. to the point where fbrosis would show up on an X-ray. He sees his rheumatologist the end of April. Guess that is something to ask about. <<It feels like I have a huge rubberband around me and I need to take a deep breath but I can't. >> Lisa and Jen....he has said before "Tight, Mom" when he gets home from playing basketball or tennis!!! Maybe that is what he's feeling....a tighning sensation and not being able to breath deeply. He ususally just sits in the recliner for the rest of the evening doing as little as possible. Thanks again, Everyone. I so appreciate it. Margaret
  15. Hi Barefut , Been thinking of you and your son, too. Hope it turns out OK and the antibiotics kick in soon. Sounds like he may need them changed or something. Do take care of yourself so you can help your son. Believe me, I know the effects of many sleepless nights worrying over kids!!! Margaret
  16. Hi Barefut , This is interesting because Gareth doens't run a fever either. The only way I know he has strep is because he has a day of throwing up first, and, then, this horrible breath. Of course, he never says his throat hurts, so I take him in when I smell the horrible breath. I learned a long time ago that an upset stomach can be one of the first signs of strep. So glad your son is OK. Take care, Everyone. Margaret
  17. Barefut , How is your son today? You've been on my mind all day. Margaret
  18. Hi Janey , Just wanted to wish you well for Friday. I have no clue what ablation for the heart is about but it sounds like a 'rooto rooter (sp)' job for the heart!!! You'll be in my thoughts, Margaret
  19. <<did you have a positive ANA or SCL-70/Anti centromere when first diagnosed, and if or what organs have been affected over what period of time?. I hope that you don't feel that I am intruding on you all but am curious! Kind Regards Celia>> Hi Celia , I can only speak for my son. He was diagnosed last Oct with esophageal dismotility after a swallowing test. He also had a 15# wt loss at the time and a high sed rate. The blood work done in Nov. showed negative ACA and Sclero AB autobodies, but postive Anti-RNA Polymerase 1/111 and a positive ANA. Since then, he has also had a PFT done that showed some restrictive lung disease. There's some really good info in the medical section on the types of blood work and from what I have learned, not all sclero pts show positive test results but can still have the disease. Take care, Everyone. Margaret
  20. Louise , Enjoy the day!!! You deserve it. My dear husband and 20 years old son both play rugby. I can not stand to watch Ryan play, though. Last fall, he had a major collision and now is the proud owner of a $7500 face remake!!! Rugby is growing here in the States.....much to my dismay!!! Happy Paddy's Day to you.....from a 1/2 Irish American!!! Margaret
  21. Hi, Everyone , Could use a little help/advice. I have gone through the medical papers and nothing lists hallucinations as a symptom for sclero. Does anyone have any facts on this possibility or has anyone else suffered the same. Gareth's started as the slapping around his mouth. Now it'smacking the air for bugs (?) or smacking behind his head as if to hit someone standing there. I will take him in tomorrow to have his ears/eyes checked, but wish there was some info to go in with. Of course, when I ask him why he did that or does he see bugs, I get no answer. Thanks everyone.........take care, Margaret
  22. <<Tonight I was practicing Tae Kwon Do with my son. I can do some pretty awesome kicks for an old lady of 41 with scleroderma. I might just have to sign up for the class and start working towards a black belt. Love, Barefut >> Barefyt , Thanks for putting a smile on my face this morning!!! Take care, Everyone. Margaret
  23. Hi Pauline , Gareth is 18 years old....not a little guy....Just very few words due to the DS/Autism. We are assuming the hallucinations were from a severe left ear infection. His primary care physician found it Mon. am and put him on meds. Late Tues am, after a nap, I noticed all the blood and puss coming from that ear....he probably ruptured it again. He does not tell me when or where he hurts....everything comes out in behaviors. He's acting OK today. The other possibility for the hallucinations is the Prilosec. He was switched to that from the Nexium 3 days before the hallucinations started. One of the rare side effects of Prilosec are hallucinations. His gastro doctor said to drop it immediately when I talked to him on Mon. Maybe down the road, after the ear is OK, we will try it again. Take care, Everyone. Margaret
  24. Hi Irene , That is interesting to me. Gareth will show me the tip of his finger (pad side) and say 'sunburn'. I always look and never see anything. I have never seen his finders turn white, although he always has cold hands. Take care, Everyone. Margaret
  25. Barefut , Thanks for those face exercises. I will have to try them with Gareth since his mouth is has been bothering him so much.'s nice when people post how they really helps me with understanding Gareth's behaviors. Take care, Everyone. Margaret