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Everything posted by Margaret

  1. Hi Ragan , I don't have much knowledge on Morphea but my son was 18 years old when diagnosed with sine scleroderma, later switched to UCTD because he doesn't have skin issues or Raynaud's. It's a scary path to watch your child go on when there is nothing you can do to help, except follow the doctor's orders and hope it goes into remission. After reading the web, when my son was first diagnosed, I thought for sure he wouldn't live long. Everything I read was soooooooo depressing!!! He started Plaquenil 8 months after initial onset of disease and things slowed down. The biggest *problem* we faced was the simple fact that he was male and so young. I forgot the odds of him having scleroderma, but they were REALLY up there!!! :emoticon-dont-know: This group has been my lifesaver.....whenever I have questions or need assurance, there is always someone who can help out. :emoticons-clap: :emoticons-thankyou: Take care, Everyone. Margaret
  2. Hi SunnyBuckeye and Gita , Welcome to the group. I joined in November 2006 because of my son, who is now 24 years old. He started with the + ANA, + anti-RNA Polymerase 1/111, esophageal dysmotilty, chostrochondritis, 20 pound weight loss, low Vitamin D level, extreme fatigue and autoimmune induced depression. His main complaint was that his esophagus wasn't pushing food down. He did not have Raynaud's or skin issues at the time. He has since developed Raynaud's, dry eyes, and Addison's disease, but still, no skin issues. He's been on Plaquenil since June of 2007 and that helped to ease the esophageal problems. He's also on an SSRI for the depression. Sunny.....your one sentence caught my eye....chest pain that feels like a heart attack. I am not a doctor, but from my son's experience, I can tell you that he had symptoms of esophageal spasms that are very painful and feel like a heart attack. Under the tongue meds for heart attacks are used for esophageal spasms, too. I'd suggest a trip to a Gastrologist just to rule out any gastric issues. Also, stress plays a HUGE part in this disease......and, you are under a lot of stress!!! A psych. doctor told me that the same autoimmune process that attacks the body, also may attack the brain/chemicals. PLEASE....don't be embarrassed to see a psych. doctor if you get so depressed. My son had a horrible senior year due to this disease but managed to eke out 2 years at college. Stick to your dream of medical school.....just realize that it may be harder than most kids. Don't be afraid to open up to professors/doctors, too. They may be able to help in ways you're not aware of. Take care, Everyone. Margaret
  3. Safe And Sound

    Hi Miocean , Thanks for all the insight you have learned throughout all of this. I knew of gas generators and have seen the long lines of people trying to get gas. I also heard that the generators needs to be away from the storm, but not inside due to carbon mononixde poisoining. So, where do you put them? Anyway, like you, I will continue to check into them. We do have natural gas here at our home for heat. That may be the way to go. Unfortunately, I have a dear husband who feels that if he hasn't needed something in 50 years, why buy it now!!! Take care, Everyone, Margaret
  4. Safe And Sound

    Hi Miocean, I'm catching up on the messages today and saw your post. I hope you have power and heat back by now. I saw on the news where the rest of NYC area should have all their areas back on by tomorrow. I can't begin to imagine what many have been living through. I did look for a generator a week before Sandy hit and they were all sold out and no where to be found/ordered.....in central Pennsylvania!!! We do have Gareth listed on the electric company's emergency list due to his C-PAP and Nebulizer (asthma) but even they said to go to a shelter and not rely on that. Take care, Everyone. Margaret
  5. Juvenile Scleroderma?

    Hi Ku'uipo's Mom & Lisa, Welcome to a wonderful family of friends, support, and the most up to date medical knowledge on scleroderma and autoimmune issues. :emoticons-clap: My son started with esophageal dysmotility, 20 wt loss, loss of voice, and costochondritis at age 18.....6 years ago. Blood work showed + ANA and + Anti-RNA Polymerase 1/111. I was thrown into the world of scleroderma -- something I had never heard of. :emoticon-dont-know: . His diagnosis is UCTD because he didn't have skin issues or Raynaud's at the time. He was put on Plaquenil 6 months after diagnosis and he has slowly progressed into the Raynaud's (although not severe), Hypothyroidism, and SICCA (dry eyes and dry mouth). Now, we're working on autoimmune induced Addison's diagnosis. He has never shown any signs of skin changes consistent with scleroderma, all internal. I look at my job, as Mom, to stay one step ahead of the unknown!!! When I can't figure out what's going on, I come running to this group with my questions!!! :wacko: Take care, Everyone. Margaret
  6. Daughter with New Diagnosis

    Miocean , You sure brought the big smile to Gareth's face this morning!!! He thought that was neat!!! Thanks for the positive support, too. That brought a big smile on my face!!! :emoticons-thankyou: Take care, Everyone. Margaret
  7. Daughter with New Diagnosis

    Hi Madisonsmom , I learned about Scleroderma when my son was 18 years old and just starting his senior year. He complained that his food was getting stuck, which led the Gastro doctor to order a swallowing test. Turns out his esophagus wasn't working after the first 2" or so. He ordered a mess of blood work and it came back + for scleroderma (ANA + speckled pattern, anti-RNA Polymerase 1/111) He also had the chest tightening (Chostrocondritis?), a 20 # wt loss, over whelming fatigue, autoimmune induced depression, but no skin issues/Raynaud's --- so they went with UCTD and not sine scleroderma. After 6 months, they started him on Plaquenil and he stabalized for a while. He has since developed Raynaud's, hypothyroidism, and SICCA (dry eyes/mouth) but no skin issues. His Endocrinologist is currently working him up for Adrenal insufficiency...possibly secondary to the UCTD. He's 24 years old now and there have been many ups and downs.....just go with your gut feeling and push for answers when something seems "not right", His biggest issue has always been the fatigue....."so tired, Mom". Take care, Everyone. Margaret Mom to Gareth, 24 years old, DS/ASD/OCD
  8. Oh, my....what a sad day. My thoughts and sympathy are with her family. I'm sure she's in a beautiful place where there's no pain. Margaret & Gareth
  9. Visit With Scleroderma Specialist

    <<Hey, i won the "Most Ologists" Award! :emoticons-clap:>> Hi Miocean , I am so happy to read that you're doing so well....been following your journey for years!!! :emoticons-clap: I had to chuckle at the *Most Ologist* award.....just like Gareth with his Pulmonologist, Gastrologist, Rheumatologist, Immunologist, Endocrinolgist, Cardiologist!!! Appts are every 3-6 months each....all totally in awe as to what *this kid* could possibly come down with next!!! :emoticon-dont-know: Do take care, Everyone. Margaret
  10. Hi , I find this a very interesting article since Gareth has such a bad reaction to Prednisone. The psychosis and night terrors are so scary. People also need to know that some of these new, stronger antibiotics, like the fluoroquinolones (Levaquin), can also cause psychosis. Take care, Everyone. Margaret
  11. Out of the Sclero Closet

    Hi Everyone, Just this past Saturday afternoon, someone asked me what was wrong with Gareth? He was participating in a Special Olypmics Tennis clinic and kept kneeling down on one knee with his hands/chin on the racket handle to support himself. You could tell he was tired but he insisted on staying. At first, I told the lady he had autoimmune *issues* and got tired easily. When she pressed on as to *what is that*, I tried to explain Scleroderma, too. It's amazing that many people don't even know that Rheumatoid Arthritis is an autoimmune disease and how they can all zap your strenght/energy. I guess if we all tell one person, at a time, people will soon learn more about autoimmune diseases. Take care, Everyone. Margaret
  12. Hi Everyone, Does anyone take a pill for their Sjogrens' dry eyes and mouth? Gareth won't allow me to use drops in his eyes :glare: and the rheumatologist recommended Salagen (pilocarpine) tablets twice a day. I'm skeptical about adding another pill to his daily number - he's up to 6 now, plus a multivitamin, flaxseed, and acidophillus. Do dry eyes hurt? :emoticon-dont-know: He's always twitching/blinking, but he has Tourette type tics, too. Would it help to give it to him at night...do dry eyes bother you when sleeping? She said it would make him drool.....not something he'd be bothered by but others would!!! (Emoticon for Gross!!!) Thanks for all your help. Take care, Everyone. Margaret
  13. It's been two years today

    Hi Miocean , I love happy news :emoticons-yes: Thanks for sharing with us your journey and feelings. :happy-day: Amanda & JudyT.....I sure hope you two start feeling better. :sick2: And....to really put the damper on Miocean's good news, Gareth is on his second round of antibiotics for a sinus/ear infection that progressed into left lung pneumonia. So much for 8 weeks of Iv G infusions making him healthier!!! I guess the good news is that he did not end up in the hospital like the last two times of pneumonia. I think we all need a group hug!!! :emoticons-group-hug: Take care, Everyone. Margaret
  14. Today Was A Life Lesson

    Miocean, JudyT, and to all my other Scleroderma cyber friends , I don't know how you all do what you do....many days just putting one foot in front of the other. Some days only taking one step and other days 10 steps. The uncertainty of each day must be so frustrating emotionally. I may not respond to all posts but I do read most of them and I do keep you all in my daily thoughts. Take care, Everyone. Margaret
  15. Medication for Sjogren's

    Hi Everyone, Thanks for all the responses and feedback. I did try the Salagen for about 2 weeks and noticed a definite change in behavior.....very reclusive/shut down/in bed a lot. :sick2: I was giving him one pill a day, 5 mg, in the morning, figuring it would help his eyes during the day. Unfortunately, he would never tell me what was *wrong* but he was spending too much time in bed and that was the only new medication. He sees the eye doctor next month and I will ask about other options. It may have to be that they get so irritable that he will want the eye drops. That is the one *quirk* of autism that really bothers me.....the inability to relate pain and discomfort. :angry: Take care, Everyone, and once again, a BIG :thank-you-2: for all of your help and insight. Margaret
  16. Happy Valentine's Day!

    :balloons: Happy Valentines Day to everyone. Thanks for being here to help!!! :balloons: Take care, Everyone. Margaret
  17. Hi Craig , I first learned about autoimmune induced depression 4 months after Gareth was diagnosed. These days, it's still hard to pinpoint if he is *shutting down* due to depression, pain, fatigue, or all of them together. :( My heart goes out to all of you struggling with this combination. Take care, Everyone. Margaret
  18. Medication for Sjogren's

    Hi Jo , When the eye doctor did the Schirmer's test last year, and Gareth did so poorly (I think he had a 2 and 3 out of 6)he said the treatment was Plaquenil. I told him Gareth had been on it for almost 5 years.....so why the SS now? He didn't know. The Rheumatologist says the same....not sure why the SS symptoms are progressing. He goes in for his yearly exam with the eye doctor (because he's on Plaquenil), at the end of this month. Thanks for all the help! Take care, Everyone. Margaret
  19. IVIg Infusions

    Hi Everyone, If I'm not mistaken, there are one or two individuals on this site doing the IV Ig infusions. Gareth has been to the third Immunologist (supposedly the best in the area) and he said he's a prime candidate for the infusion because of his MBL deficiency and the IgG 2/4 deficiencies. Of course, I've been reading online for a week now and not really liking what I read about it. I don't have to make a final decision till the end of November when he goes back to this doctor. I'm not finding any real *pros* for it and read that it takes 3-5,000 blood donors to get a single dose. It seems very controversial..... 'Course we all know how reliable the web is!!! Anyways, would whoever knows about it personally contact me privately or through this site? Has your health really improved? Did you suffer the intense headaches/migraines? I'm wondering if the better route would be just taking antibiotics whenever you need them? Thanks everyone, Margaret
  20. IVIg Infusions

    Hi Everyone, I did it....I stuck my kid!!! Gareth never even flinched -- he just looked at me like I was nuts!!! :rolleyes: Like last week, it took 1 1/2 hrs and he did just fine. The nurse will come next week, and then, we're on our own. He saw the Immunologist today, too, and he said it will take almost 6 weeks for the body to build up immunity. He will have blood work done at that time to see if his levels of IgG have risen. I'll keep you all posted. :thank-you-2: Margaret
  21. Plaquenil pros and cons

    Hi Vanessa , My son was put on Plaquenil 9 months after being diagnosised with sine scleroderma. At the time, he had esophageal dysmotility (2/3rds of his esophagus), positive ANA, + Anti-RNA Polymerase 1/111, severe fatigue, and tightening of the chest cavity (chondro?). Anyway, it took them quite a bit of time to decide to try Plaquenil because he didn't 'fit' the scleroderma pattern. He was only 18 years old and male. It was 3 months later that he told me his 'food tube' was working again. He's been on it for 5 1/2 years now with no significant side affects or flares since. His biggest issue, like many of you, is the overwhelming fatigue/tiredness. I did ask his rheumatologist about taking him off it and she said 'NO'. His diagnosis now is considered UCTD. Take care, Everyone. Margaret
  22. IVIg Infusions

    Hi Everyone, Well, today Dad and Mom learned how to do subQ Ig infusions. :emoticons-clap: The nurse walked us through the prepping and put in the first needle. Dad did the second one with no problem. Me.......well......I just looked at that needle (1/2" long) and said "I can't do this." :unsure: They are very fine needles, go straight in all the way, and Gareth said they didn't hurt going in......but.....I just couldn't stick him. Not today, anyways.....maybe next week !!! It took about 1 1/2 hrs for the 50 cc's of fluid to go in the 3 needles and there was no major drop in BP this time. As of this evening, he's had no headache or other side affects. Janey......the nurse told me today that many insurance companies won't pay for weekly infusions because they are *more expensive*. I find that hard to believe since the individual is expected to do them on their own (after a 4 wk learning session) and in their home environment. I suppose the monthly IV's are done in a clinic or hospital setting with a nurse....right? :emoticon-dont-know: Also......Gareth saw his old Rheumatologist, from 2 years ago, on Thurs. He made a fine entrance.....when they called him to go back to the examining room, he stood up, walked two feet, and promptly crashed down. :excl: His BP dropped too fast and they came rushing with the wheelchair. doctor said he does not have Raynauld's if it is his hands and feet turning completely white, then red. That is from the vaso vaso constriction and OH. So.....I get to take that off his list of medical issues. :VeryHappy: She said R's is red, white, and blue....you need all three colors in the fingers and/or toes. You guys are great....thanks for being here!!! Take care, Everyone. Margaret
  23. IVIg Infusions

    Hi Everyone, Well, Gareth had the first infusion yesterday and no severe side affects or headache. It took about 2 1/2 hrs and the only *issue* that came up was his blood pressure dropping occassionally to @ 78/48. The nurse would *back off* a bit on the fluid speed and everything would return to normal. I guess this happened 2 times. On Monday, he will start the subQ infusions with 3 needles and a pump. She assurred me that this is something Gareth & I can learn to do weekly. My understanding is that it is like an insulin pump? I will keep you posted. Take care, Everyone. Margaret
  24. My thoughts are also with Birdman's wife and family. I forgot.....is she also struggling with Scleroderma? Margaret
  25. Yearly Test Updates

    Hi Miocean , I was so happy reading your post that I had to X out of AOL and go to Mozilla just so I can put up smiley faces and dance!!! For some reason, AOL doesn't allow them to come through. Congratulations, Lady!!! :emoticons-yes: You have been such an inspiration to me over the past years. :happy-day: :happy-dance: :emoticon-hug: :happy-dance: :happy-day: Take care, Everyone. Margaret