Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by Margaret

  1. Getting To Know You - Archives

    Hi Donna , Welcome to the forum. I tried to send this earlier but it wouldn't go through. We live in Lancaster Co., Pa. My son (19y/o) was diagnosed last fall with sine Scleroderma or UCTD....depending on which doctor you talk to. He's got major esophageal/gastric issues, mild restrictive lung disease, vocal issues, fatigue and postive blood tests but no Raynauds or skin issues.......yet. He started Plaquenil June 1 and I have alredy seen positive results as far as him having more energy, *****, etc. Tonight his Dad had a sneezing fit and Gareth said 'bless you' when he finished and a few seconds later he muttered 'not.' That's the kid I want back!!! Take care, Everyone. Margaret
  2. Any Sines Out There ?

    Hi Gemma , Last November we found that my son's esophagus had stopped working/pushing food into the stomach. His gastric doctor recommended followup blood work which showed positive ANA, positive Anti-RNA Polymerase 1/111, and a high sed rate - 93. He was very tired and had lost a lot of weight since that summer. His rheumatologist said 'sine scleroderma' but the doctor in Pittsburgh said UCTD since he has no Raynaud's or skin issues. Last month, I heard from Pittsburgh that Dr M was calling it sine scleroderma....he's only had 2-3 cases. He has major gastric issues and mild restrictive lung disease. Gareth is only 19 years old. Take care, Everyone. Margaret
  3. Kobis Update

    Hi Jenny , I don't know what to say exept that I am walking in your shoes, too. Gareth (19y/o) was diagnosed last Nov.....his is internal with no skin issues.....yet. I know that he spent the last 8 months in pain and is still suffering from gastro issues. It's so hard to watch. He ate his breakfast and is back upstairs in bed. He did start Plaquenil 3 weeks ago and I do see some 'light' back in his eyes and he does have more energy. Just wanted to let you know you and Kobi are in my thoughts. Take care, Everyone. Margaret
  4. One More Thing

    Hi Barefut , Gareth takes 15mg of Lexapro.....but he was on that for his OCD before the sclero started. He started at 10 and the psych doctor upped it becuase he thoguht he was getting depressed last March. I know with G's meds, it only takes a little....usually the smallest dosage to see positive results. Maybe that would be the way to go...."start low and go slow" is the motto of the DS/Autism group when it comes to meds. I know that other kids take Wellbutrin for anxiety issues associated with their autism. Do take care, Margaret
  5. How Long?

    Hi Rachelle, My son, Gareth, is 19 years old and was diagnosed last November after we found his esophagus has stopped working. He also has mild restrictive lung disease, vocal issues, positive blood works, but no skin issues or Raynaud's. Right now, they are saying UCTD, probably sine Scleroderma. Take care, Everyone. Margaret
  6. Gi Issues

    Hi Everyone, For those of you with gastric/esophageal issues, could you explain the feelings you had when they had to *stretch* your esophagus. I know his esophagus doesn't push the food down and he has to 'wash' it down with liquids. What do they stretch....the esophagus itself or the opening into the stomach? Gareth has been in pain now for over a month with this *hard* stomach feeling after meals. He doesn't complain too much after breakfst....usually Rice Krispies or Cheerios. Lunch and supper is a different story, though. After he eats, he's in his recliner curled up because it's 'hard and hurts'. His stomach emptying was OK....I am assuming this since the GI doctor hasn't called me differently. That is one of the main problems right there....he won't call me, period. I have a call into his primary care physician to find a new GI doctor.....I am half tempted to call Dr Medsger's office, too, and find out who he refers his sclero pts to that have gastric issues. Thanks everyone........I really appreciate you help. Margaret
  7. Gi Issues

    <<I get terrible pain which has meant a few visit to ER, after a few test they discovered that it was cause by esophogereal spasm, the doctor placed me on ADALAT twice a day which is a blood pressure medication to relax the muscle a little>> Hi Sharon, Gareth was put on Isosorbide for esophageal spasms. His doctor wasn't sure he was having them.....we just know that it's painful during/after meals when his food is 'stuck.' This 'hard' stomach is something that has been going on for over a month now and he woke up this morning and fell to the floor because his stomach hurt. I found that out tonight when he went to bed.....he told me 'matter of factly'...."Mom, morning, I fall stomach hurt, 6:02." That's my whole problem....this stupid autism and so little communciation skills!!! I guess he had gotten up and out of bed at 6:02 and, then, fell down on the floor because his stomach hurt so bad. "Thanks for telling me now, Gareth!!!" Before, he complained that it was just hard.....now it's chronic pain all day. Take care, Everyone. Margaret
  8. << I told them if they let my almost 15 year old back in the OR my blood pressure would definitely rise! >> Nan , So happy to hear some good news!!! I know what you mean about kids making the blood pressure go up....although it's usually my dear husband's. I just take their actions in stride since I *know* I didn't walk around with no halo on back then!!! Take care, Everyone. Margaret
  9. Gi Issues

    Thanks Jefa. That's a good site for explaining dilation and I hadn't seen it before. You guys seem to come up with sites for just about everything!!! I am not sure that is Gareth's problem.....just that he has complained for a month that his stomch is 'hard.' Some days, the 'hard' is painful but other days it's just 'hard.' Take care, Everyone. Margaret
  10. Kidney Question

    Hi Everyone, Does anyone else have kidney problems with their sclero? I sat down with all of Gareth's blood work from the past year and jotted all the changes. One of the things that caught my attention was his GFR....glomerular filtration system. I was told normal was 60-100. Gareth's was 93 last Sept. and March but dropped to 83 this May. I have since read on the internet that normal is 120-125 and that below 90 is considered 'mild kidney failure'. I asked his rheumatologist about it and haven't gotten a response. His primary care physician said he would 'check into it' and hasn't gotten back. The two of them are so concerned about his weight loss and gastric issues. I know that Gareth had the positve Anti-RNA Polymerase 1/111 twice which is suppose to be an indicater of higher kidney invovlment with scleroderma. My inclination is to take him to a nephrologist on my own......am I being too anxious over nothing? Take care, Everyone. Margaret
  11. Antidepressants

    Hi Jennifer , As much as you want to fight it and be strong, if you are under a lot of stress and pain (which you are) your body may be telling you the chemicals are off in your brain. That's the connection between autoimmune diseases and psychological problems.........straight from Gareth's psych. Stress and pain increase one chemical in the brain which decreases others that can lead to depression and anxiety. You have no reason to be ashamed about it.....you have no control over it. I know several women on another list that are on SSRI's and others are on something called Wellbutrin (sp). Take care, Everyone. Margaret
  12. Miralax

    Hi Sweet , Gareth's gastro doctor put him on Miralax a month ago and he wasn't having any bowel problems. He wants to make sure it stays that way.....I guess. I mix it with his milk in the morning. Take care, Everyone. Margaret
  13. Why Does The Fat Disappear?

    Hi Jennifer , I don't know if it is fat disappearing or what. Gareth doesn't have the skin issues but his collar bone sticks out so far now.....it's like he's got these two hard boney spurs sticking out. He's lost 20 pounds, but even skinny people don't have bones sticking out like his. It's like all the skin has been pulled down from his neck area towards the inside of his body.....weird looking. Take care, Everyone. Margaret
  14. Plaquenil

    Hi Everyone, Is it just me or wishful thinking? Gareth started Plaquenil 10 days ago and I swear there is a difference already. He didn't sleep/nap all weekend like he usually does and is actually turning on the TV and watching again. He still complains of his 'hard stomach' and we're trying to get the ENT doctor lined up with the gastro doctor for another exploratory on his vocal cords, esophagus and colon. Take care, Everyone. Margaret
  15. Pure Agony

    Barbs , Oh, my.......ouch!!! I am such a wimp....I doubt I could have done that!!! Hope you're feeling better tomorrow. Take care, Everyone. Margaret
  16. Scleroderma Pulmonary Fibrosis

    Morning Whirlway, That's a good link.....very easy to read and understand. Thanks. Take care, Everyone. Margaret
  17. Tests How Many.

    Hi Kobi , Since Gareth was diagnosed last Nov. he has seen the rheumatologist, Cardiac doctor, gastric doctor, and Ear/nose/throat doctor, and Psychiatric doctor.....plus his regular doctor. Sooooooooooooo, you are getting the whole workover....which is good. Take care and keep us posted. Take care, Everyone. Margaret
  18. Kidney Question

    Hi Pamela and Sherrill , Thanks for the advice. Sherrill....I think I will hold off on the Nephr. for a while. You calmed my nerves quite a bit. I didn't realize the numbers would get so low before total failure and dialysis. He has a ways to go and I will wait and discuss it with his rheumatologist the end of July. Take care, Everyone. Margaret
  19. Hi Nan , WOW....still bleeding? No wonder you're anemic. I thought he lasered you recently. Keeping you in may thoughts and ........ Take care, Everyone. Margaret
  20. The Brick Wall

    Oh, Barefut , What a day......but kids are so good about understanding situations. I am sure your son understands more than you think. Tell him Happy Birthday from your cyber friends. Take care, Everyone. Margaret
  21. Kobi

    Hi Kobi , My son, Gareth, just tuned 19 and was diagnosed last Nov. with Sclero. His esophagus has stopped pushing food down, but he has no skin problems. What sent you to the hospital for testing and how did they decide on scleroderma? Best wishes to you as you learn about this illness. There will be lots of internet friends for you to 'call on' whenever you have a problem, question, or are just having a bad day. Take care, Everyone. Margaret
  22. Gareth Update

    Hi Everyone....as usual, I have been learning so much from everyone. I thank all of you for being so open and upfront about all your 'issues' with this disease. Gareth's rheumatologist e-mailed me last night and told me of his blood work. The ACA is still negative but the sed rate is back up to 62 (it had been down to 48) and his Fibrinogen was 418 (normal is 150-350). He is sending me a script for Plaquenil but said it would take a couple of months to kick in and keep him on the Meloxicam another month. He's got a 'gastric emptying' study scheduled for next Friday to find out why his stomach is 'hard'......as he puts it. Reading about all the gastro issues and Barbs not even being allowed to eat has got to be hard on all of you. It would be VERY hard to explain to Gareth that he couldn't eat ANYTHING.....no way he'd give up his cheeseburger/fries, pizza, Bar-B-Q chips, hot chicken wings!!! Fortunately, those aren't daily eatings. He'd rather suffer than give up food. Take care, Everyone. Margaret
  23. Good News For Once

    Jefa , Normal for adults WBC's is 4.8-10.8 on Gareth's blood sheet. M
  24. Gareth Update

    Hi Jefa , I got back about 1/2 hr ago and came straight to the 'puter trying to find info on Gastric emptying.....times, what's normal, etc. Is there anything in the files here? I jotted 2 times down quickly from what I saw.....40% after one hour and 61% after 11/4 hr. Then they let us go home. Gareth had to eat oatmeal with milk. Instead of laying for 90 minutes, he had to sit up in a chair. He did really well.......considering he never tried oatmeal before!!! He kept pushing the bowl away and the tech kept saying 'no....you have to eat all of it.' He was in a lot of pain in the beginning with the full stomach. I hope the tech puts that in the report. Yesterday, his primary care physician called and told me he was positive for H Pyloria...........again. It was from a blood draw on May 17. I have no clue how an ulcer feels but we both agreed that it is probably the 'hard' feeling that Gareth is relating to. dear husband and I have never had an ulcer so we don't have a clue what he is going through. His gastro doctor is setting up an endoscopy/colonoscopy to check 'things' out. He had dropped to 140#....down from 158# last July. He is coordinating it with an ENT doctor who will look at the vocal cords and find out why Gareth can't get past a whisper on most days. Thank you for asking and keeping him in your thoughts. As I have said before, this site has been a blessing to me........I have learned so much and you all have helped me understand what Gareth is feeling. Have a good day, Everyone. Margaret
  25. Getting To Know You - Archives

    Hi Timo , My son, Gareth, is 19 and just diagnosed with sclero last Nov. The doctors have been going back and forth between sine sclero and UCTD.....all the same to me, his Mom. I know he has had a rough year of school and his strenght is gone most days, but he will be *graduating* next Friday with his class. I put that in astericks because he has Down Syndrome and Autism which allows him 2 more years of schooling. He wants to go to a state university (PSU) that offers a program called Lifelinks....where special needs kids can 'go to college.' They can continue their academics and work on job skills while interacting with their normal peers. As sick as what he has been this year, he is still excited about going this fall. Best of luck in your schooling to be a primary school teacher.....the world can always use good teachers!!! Take care, Everyone. Margaret