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Everything posted by Margaret

  1. 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
  2. New Patch

    Hi Louise , So glad you are coming to the States for Holiday....too bad it's ONLY to NYC!!! Just kidding...there is sooooooooo much to see all over the States. Hope you enjoy your visit!!! Take care, Everyone. Margaret
  3. Muscle Spasms?

    Kelly , I get horrible leg cramps at night....in the calf, ankle and foot. If I don't eat a banana during the late afternoon, I take an OTC Potassium pill (99mg) with my supper. MY primary care physician suggested the OTC supplement. If I do one of those two, then I won't be awaken with cramps. If I do both, I will also have cramps.....go figure!!! Take care, Everyone. Margaret
  4. I'm Not So Tough.

    Barefut , My heart goes out to you. Please.....if you get so low that you hit bottom and can't stop the crying, see a psychiatrist. I know....one more doctor to add to your list. But, Gareth's reg psych (for the autism) brought in another psych who deals with the psychological affects of autoimmune diseases. I have mentioned this before.....autoimmune diseases CAN mess up the chemistry of the brain and depression is the result. Stress, alone, which is constant in your life, is the worst culprit. You people are going through so much.....don't be ashamed to ask for help from a psych. Take care, Everyone, and Happy Memorial Day to those in the States. Margaret
  5. Scoliosis

    Hi Sharon , I do not have sclero....my son has UCTD. I do have a severe curvature (S), though, and I am in pain almost daily. On the worst days, I feel like I have a knife between my shoulder blades and my left hip acts up to the point where I get out of the car and walk like a 'gimpy ole lady'. I am in my early 50's. There is a doctor in Baltimore that is doing reconstructive surgery on ladies like me. I see him this week, in fact. Take care, Margaret
  6. Teenager

    Hi Kobi , I also have a son with UCTD.....19 years old. They diagnosed him last Nov. How old is your son and why is he being hospitalized? This forum is great for information and encouragemnt. Take care, Everyone. Margaret
  7. Choking Anyone?

    <<The reason for all this was as she said, my trachea (voicebox) had become "pulled up and tethered" as a result of the scleroderma!>> Hi, Everyone....WOW...I wonder if this is why Gareth doesn't have more than a whisper on most days?!?!? I will keep this in mind when I talk to his rheumatologist the next time. Take care, Everyone. Margaret
  8. Pain In Neck?

    Hi Betty , This was Gareth last fall....always grabbing at this throat and saying 'hurt.' The doctor got him a swallowing test done to see if something was wrong with his neck and it showed his esophagus had stopped working. His food was sitting in the esophagus....thus the feeling in the throat area. I'd ask your doctor for a swallowing/esophageal test. Gareth will have to have another study done to see if his stomach is empyting correctly becuase for the past week he has been telling me his stomach 'is hard.' He's not much for communicating so I am not too sure what we will find. I feel like I am 'crying wolf' all the time now trying to figure this kid out. Take care, Everyone. Margaret
  9. Hi Heidi , I sure do hope everything turns out OK with your 'life complications.' Please keep posting, though, as I have learned so much from you. Take care, Everyone. Margaret
  10. Antibodies

    <<I have also found that some Dr.s have a tendancy to use specific labratories because these are such sensitive tests....numbers can vary from lab to lab depending on how carefully they were run. >> Hi, Everyone , We are running into this problem with autoantibody testing with Gareth. The Ca. labs (twice) said his Anti-RNA Polymerase 1/111 tests were positive but Dr M's lab said they were negative. His ACA was negative before, yet Dr M's lab said it was 'equivocal' and, then, positve when done the second time. Who do you believe?!?!? If a specific autoantibody is negative one time, can it change to positive the next time and visa versa? Dr M's lab is continuing to run 'immunoprecipitation' testing.....or unusual sclero tests. The common antibodies for sclero are neg. at his lab, but positive from Ca. & our local lab. Auto-antibody Patterns from the Sclero Forum are from 1998....are they all still being used today? Gareth's ANA is positive, speckled pattern and his rheumatologist said that didn't mean anything. Just curious. Take care, Everyone. Margaret PS......Mike...thanks for taking the time to put 'things into English' . So many of your posts make many medical tests/procedures more understanding.
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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