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Everything posted by Margaret

  1. Stomach Issues

    Hi Everyone..... Just have a curious question....again!!! Gareth has been complaining these past few days, after he eats his meal, that 'his stomach is hard.' It's doesn't seem to hurt him but he comments on it. I felt his abdomen/intestines and it appears fine. Any advice.....perhaps his stomach isn't emptying correctly? I will call the gastro doctor tomorrow. What studies do they do to find out if the stomach isn't emptying food.....another swallowing test or barium test? Thanks. Take care, Everyone. Margaret
  2. Stomach Issues

    Hi Heidi , That is what I thought it would be like....just like the swallowing test las October. I wish they had followed the food further, then, but it was for a swallowing study only and they found the esophageal dismotility by accident. He did OK with that study so I don't think there will be a problem with the stomach one. Take care, Everyone. Margaret
  3. Does Anyone On The Board Have Sine Sclerosis

    <<I have a great article that my Dr. just emailed to me, which was posted in Chestjournal.org. You must pay to read it, but I have the free version if you want it. It is specific to systemic sclerosis sine scleroderma. I am patient #6 of the 6 patients studied and three of my doctors were in on the article and study.>> Jennifer , WOW....in a study, huh?!?!? Most people would be proud of such an honor....too bad yours has to do with this funky disease!!! I would love to read it....how? Do you have it online that I could download it? As for Gareth, well, he turned 19 today!!! I got him one of those small, 3 prong hand massagers and told him to put it on his chin and face. He is always grabbing at his chin area and cheeks.....drooling is bad, too. He's got those white calcifications coming in his lower lip. He enjoyed the sensation and took it to bed with him.....massaging his chin. He has no voice most days and struggles to get a whisper out. That is soooooooooo frustrating for everyone!!! As for his lungs, he tries to do basketball and tennis but gets so winded quickly and has to use his asthma inhaler. We are getting ready for another round of blood work from his local rheumatologist. He also wants another PFT done. I will keep you posted. Take care, Everyone. Margaret
  4. Autoantibody Patterns

    << He also said the ANA pattern being homogenous is "better" than having it speckled nucleolar, as that is really indicative of full-blown SSc. >> Hi Erin and Jennifer , Gareth's ANA came back positive for the speckled pattern from Dr M's lab and his rheumatologist said that it didn't mean much of anything. Go figure!!! Margaret
  5. Hi Jennifer , From a Pubmed article I have copied it says "Anti-TH/TO and PM-Scl, in contrast, are associated with limited skin involvement, but anti-TH/TO might be a marker for the development of pul. hypertension." "A positive anti-Scl-70 antibodies increases the risk for diffuse skin involvement and scleroderma lung disease." Take care, Margaret
  6. Does Anyone On The Board Have Sine Sclerosis

    Hi Jennifer , Last fall, that is what they initailly diagnosed Gareth with, but now they are saying UCTD because he doesn't have skin involvement or Raynauds. I think you have Raynauds, don't you? Gareth has the fatigue, esoph. dismotility, restrictive lung disease, and pos. blood work. To be honest, I don't think it matters anymore because it seems everyone's symptons are so different that doctors really aren't too sure what to call many of their patients. Take care, Everyone. Margaret
  7. Sam , This is what I don't understand about this disease. There's no 'rhyme or reason' for the progression!!! Did she have symptoms longer than 2 years or did it just rear it's ugly head 2 years ago and now she has died? Was she being treated medically? I am soooooooo sorry for you and her husband. Things like this scare me because Gareth was just diagnosed last fall.......no one knows the progression of their disease!!! So many of you have had it for 10, 20, or more years and, then, there are people who last 2 years. Take care, Everyone. Margaret
  8. Hi Sherrill , This is basically what Gareth's pediatric psychiatrist said two months ago when he brought in another psych who was telling me about all the psychological problems with autoimmune diseases. Depression/anxiety aren't uncommon at all because of the chemical inbalances brought on by the constant pain/worrying. The pain alone associated with a chronic illness can wreck havoc with the brain chemistry. No one should be embarrassed or apprehensive about seeking help. Take care, Everyone. Margaret
  9. Sed Rates

    Hi Everyone, Gareth's sed rate has run between 50 and 100 the past 3 years. I know it's non-specific and *only* indicates inflammation, but wouldn't having an autoimmune disease cause a high sed rate? Wouldn't just having sclero or UCTD cause it to go up? I know that G's rheumatologist initially checked him for Rheumatoid Arthritis and that came back negative. He doesn't think sclero would cause a high sed rate in itself. Just curious. Take care, Everyone. Margaret
  10. Sed Rates

    Hi Janey , It's OK....I read it the same way....it may or may not be a cause. But his rheumatologist is always commenting on his high sed rate and doesn't have an answer for it. It may well be the UCTD. Take care, Margaret
  11. Auto- Immune Diseases And Autism

    Hi, Everyone, You can also send me a private message if you want links to a couple of sites I know about that talk about autism and autoimmune connections. Margaret
  12. Sed Rates

    Thank you, Janey. I sent that portion on to G's rheumatologist. I knew someone here would come up with an answer from your *files.* Have a good day, Margaret
  13. Auto- Immune Diseases And Autism

    Hi Lori , I am the Mom of an 18 years old with Down Syndrome/Autism who has been worked up for sclero the past 7 months...ever since we found his esophagus has stopped working. Right now he is UCTD. The only autoimmune disease that we can come up with on either side of our families is my Dad having rheumatoid arthritis. Take care, Everyone. Margaret
  14. Gallbladder

    <<He also wants me to start a Gluten free diet, lucky me! Jackie S.>> Hi, Jackie , Did he suggest a blood test to r/o celiac disease? I ask this because Gareth is DS/Autistic and CD is common among our kids. There is a very specialized blood test that can r/o CD but you need to have the test done before starting the diet. Just curious. Also, if he scoped you, he could have seen signs of CD....it would be after the stomach and at the start of the small intestine. Asked him if he took biopsies there. Take care, Everyone. Margaret
  15. Calcinosis

    Hi Everyone, For those of you that have calcinosis, is it only in your fingers? Does anyone have hard white bumps under the skin of their lower lip? Would this be considered calcinosis? Thanks everyone. Margaret
  16. Can't Eat Popcorn Anymore!

    Hi Everyone, OK....you got me interested in this. You can actually feel small stuff like popcorn, rice, biscuit pieces, etc, stuck in your throats? Gareth says 'it's stuck' but I thought it was a sensation....like a big lump in your throat. I had no idea little stuff would cause problems. He's been doing OK on that vasodialator....I give it to him before a big meal like supper or lunch. He hasn't complained in a week about his esophagus hurting. Take care, Everyone. Margaret
  17. Bad Day For My Gi

    Barefut , Just an idea, but maybe you are passing a gallbladder stone or kidney stone? Margaret
  18. Methotrexate

    Susiebuilder , I noticed that you have a son with sclero. My son is 18 with UCTD...doesn't have the skin issues or Raynauds....yet. We found out last Oct that he had esophageal dismotility, in Feb. we were told he had mild restictive lung disease, and he's had horrible fatigue this past school year. It was only last month when they were discussing it on the forums that I realized he was suffering so much from fatigue. He's DS/Autistic and doesn't communicate very well....especially how he is feeling. He sees his rheumatologist next week and I think he is going to put him on Plaquenil. Take care, Everyone. Margaret
  19. Does Anyone Have Chest Pain

    Hi Barbara , Gareth has had horrible chest/esophageal pain for months now. We know his heart is OK and the gastro doctor *thinks* it may be esophageal spasms. He put him on vasodilator, Isosorbide, for when he really starts to hurt. I am to give it to him before his supper so it will help the esophageal muscles. So far, it has helped. Take care, Everyone. Margaret
  20. Saw Rheumy/dermatologist...kinda Scared

    Hi Shari , Welcome to the group. My son's rheumatologist is calling his diagnosis UCTD. He was diagnosed last Oct with esophageal dismotility, restrictive lung disease in Feb., has no voice or only a whisper on many days, major fatigue issues, and has had positive ANA's and Anti-RNA Polermerase 1/111 bloodwork. All that is highly suggestive of systemic sclerosis, BUT.........he has no skin issues or Raynauds. So, he's now UCTD also. From what I have learned over the past months, though, is that it doesn't really matter the diagnosis (name) because it's the individual symptoms that they are to be treating if possible. Take care, Everyone. Margaret
  21. Hi, Everyone , I had Gareth in to see his ped gastro doctor today. Since we know his heart is OK, he and I have concluded (through all your help, of course) that Gareth is suffering from esophageal spasms after he eats a full meal. Monday evening was a really bad time and Gareth was very aggitated about his 'heart' thumping and esophagus hurting. Just sitting or standing would cause him to get upset. His doctor is going to have him try Isordil for the spasms. He said it is used for heart patients and has been shown to help muscle spasms in the esophagus. Is anyone on this med for spasms and if so, what side affects have you had besides a head ache? The pharmacy just called....they don't even have the med and will have it in by tomorrow!!! Take care, Everyone.....and, thanks!!! Margaret
  22. Vocal Cord Damage From Reflux?

    Hi Barefut , You can add Gareth to the list. In fact, we had this same discussion on the forum when I asked about it a couple of months ago. At that time, I didn't know why some days he had a voice and other days he didn't. His reflux is under control, too, so I know that isn't the problem. The ENT guys said the next time the gastro doctor puts him under, he will go in and check his vocal chords. Gareth gets so upset in church because he can't sing anymore....that is heartbreaking to me. He tries to sing and, then, the voice goes completely and he 'shuts' down on me. I tell him to whisper his song but he wants so much to sing out loud like everyone else....like he use to do. Take care, Everyone. Margaret
  23. Magazine Story Mentions Scleroderma

    Hi Everyone, Years ago, when the autism generation was starting, many poeple with Down Syndrome (DS) kids had a hard time getting their kids diagnosed with autism because many doctors didn't think DS kids could have both. There are many of us parents who, through years on a specific ds-autism site, have been able to educate doctors, school districts, and other parents about dual diagnosis. I, too, try to educate as many people as possible about scleroderma and UCTD now. I like the comparison to cancer, Jackie.....you are right, though, people don't question you on your diagnosis of cancer but everyone tells me how 'healthy' Gareth looks. Because of this site, Gareth's teachers and aide and all the families on the ds-autism know about sclero. Like this forum, we have a very compassionate group of families that are pro-active in spreading information. Take care, Everyone. Margaret
  24. <<When Gareth had his sleep study, I'm pretty sure they were monitoring his O2 levels so they probably would have said something. I know they monitored mine.>> Janey , I know they did because his O2 levels dropped to the low 80% when sleeping. He has been using the machine for over 3 years.....way before this sclero issue started. I will ask next week. Maybe they will do another study to be sure. Take care, Margaret
  25. <<Without O2 I was constantly in and out of apnea, but the O2 (and sleeping on my left side) completely stopped it. I guess they had to make a comparison. >> Hi Everyone, I am curious here. If Gareth already uses a C-Pap machine, does that mean his O2 levels are OK at night? No one has mentioned him seeing a Pul doctor yet even though the PFT showed mild restrictive lung disease. He's got to see the rheumatologist next week.....guess I should ask him. I know the C-Pap machine keeps the airway open and prevents apnea, but does it do anything for the O2 levels? Take care, Everyone. Margaret