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Everything posted by Margaret

  1. Margaret

    Hip Pain - Bought A Cane

    Hi Barefut, Can you ask your primary care physician for an X-ray to see if you have hip dysplasia or nerve damage due to sclero....kind of like your carpel tunnel only in your hip? Get the answer first before having to make an appt with a another specialist. Been thinking of you.....you sure have had it rough lately. Gareth got the handicap placque a few years ago....right before his surgery for hip dysplasia because he couldn't walk and was in a wheel chair. Boy, I still use it now for him because he still can't walk far even after surgery.......only now it's because of the sclero. Take care, Everyone. Margaret
  2. Margaret

    My Dermatoligist Appt.

    Hi Everyone, From reading these stories about calcinosis, I am sure that Gareth has these, too. He's got 2 prominent hard white spots on his lower lip (don't know if you can get them there) and what looks like zits on his chest only they never amount to anything except hard white bumps that don't disappear or do anything. Thanks for the info.....will relay it to the rheumatologist in Aug. If so, then he would have the C & E in CREST. Take care, Everyone. Margaret
  3. Hi Nan , No, Gareth doesn't have watermelon stomach and his hemoglobin is on the high side. He is scheduled Aug 9th for another endoscopy to find out why he's in so much pain and has this 'hard stomach' .......as he puts it. His rheumatologist thinks that maybe it has nothing to do with his 'insides' but is probably rib/sternum pain from the scleroderma itself. Take care, Everyone. Margaret
  4. Nan , Man....that would mke me so depressed and I don't even have GAVE!!! It sounds like it's chronic and can't be cured/eliminated. Will you have to have an endoscopy every 3-4 months for the rest of your life? Is it painful.....do you know when you're bleeding inside your stomach? Got Gareth here to think about!!! Take care, Everyone. Margaret
  5. Margaret


    You two are so funny!!! Margaret
  6. Margaret

    Off To Another Doc

    Hi Everyone, Gareth had an abdominal ultrasound done Thurs for his 'hard stomach' and chronic abdominal pain to r/o gallbaldder stones, etc. Well, the good news is there were no stones and the gallbladder looks fine. He will have the HIDA scan on Mon to confirm that the gllbladder is OK. The bad news is the ultrasound showed hydronephrosis of both kidneys. I googled that with scleroderma and came up with 10 pages of reading matter. BUMMER....... His primary care physician said to take him to a nephrologist and get it checked out. That may be the reason for the 10 pt drop in his GFR last month. Anyone with kidney problems who started out this way with hydronephosis? Take care, Everyone. Margaret & Gareth.....he's watching me type!!!
  7. Margaret

    Nan's Visit To Johns Hopkins

    Nan , So glad you have some good news from JH's. Sure wish you could get that watermelon stomach healed, though. Take care, Everyone. Margaret
  8. Margaret

    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
  9. Margaret

    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
  10. Margaret

    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
  11. Margaret

    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
  12. Margaret

    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
  13. Margaret

    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
  14. Margaret

    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
  15. << 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
  16. Margaret

    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
  17. Margaret

    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
  18. Margaret


    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
  19. Margaret


    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
  20. Margaret

    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
  21. Margaret


    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
  22. Margaret

    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
  23. Margaret

    Scleroderma Pulmonary Fibrosis

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

    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
  25. Margaret

    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