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Everything posted by Margaret

  1. Sclero doctors

    Hi Shelley, He's not listed under your expert panel anymore for PA, just a Dr. Sergio A. Jimenez, Jr., in Philly. I may have to use him, though, because when I called Dr. Medsger's office, he's not taking new patients and Gareth would be considered a new patient since he hasn't seen him in five years. Gareth has had a couple of REALLY bad days, pain wise. I Googled *does Sjogren's cause pain* this morning. Oh, my.....the articles that came up!!! :( What I don't understand is the lack of empathy by his current rheumatologist and internist. He was diagnosed with SICCA several years ago and I read where the med of choice for Sjogren's Syndrome is Plaquenil. Well, he's been on Plaquenil for almost 6 years now and still developed SICCA/SS. By the way, are they the same SICCA and Sjogren's? :emoticon-dont-know: It's not just the fatigue, but the physical and neurological aspects of this that concern me. So, he had a + ANA (speckled pattern) and + anti-RNA Polymerase 1/111 six years ago. Now, he has a - ANA, but a + SSA, +SSB, and +Jo-1. I don't understand all this!!! :emoticon-dont-know: Thanks for your help the other day....it's so much appreciated!!! :emoticons-thankyou: Take care, Everyone. Margaret
  2. Sclero doctors

    Oh, it would help if I Googled the right name!!! :emoticon-dont-know: Medsger....not Metzger. Found him. :emoticons-yes: Margaret
  3. IVIG anyone?

    Hi Fragiledancer , My son, Gareth, 24 years old, has been receiving IV Ig infusions for a year now because he is deficient in IGg 2/4 --- the ones that fight bacterial infections. He also has MBL deficiency --- a component that fights bacterial infections, too. He goes every 4 weeks and they usually take 3 hrs. He does suffer from the headaches, and since last Aug, needs asthma meds for a week or two after because they can cause constriction of the lung bronchi. The good news is that he's only had one sinus/ear/pneumonia case in the past year and wasn't hospitalized for the pneumonia. They do work for him but take a physical toll on his body. He was diagnosed with UCTD, at age 18, due to esophageal dismotility, + ANA, + anti-RNA Polymerase 1/111, 20 # weight loss, extreme fatigue, and chostrochondritis. Take care, Everyone. Margaret
  4. Hi Barefut , Thanks for the walk down memory lane!!! I can sympathize since I had two boys - less than two years apart. During Gareth's prime, between 10 and 18 years old, he and his brother would do the same. Even though Gareth is basically non-verbal, he's very high functioning and would usually be the instigator of fights. He knew what buttons to push to get Ryan riled up and yelling!!! I'd ask both if I should stop the car and let them out, Ryan would yell *no* and Gareth would sign *yes and point to Ryan* ....meaning let Ryan out!!! Take care, Everyone. Margaret
  5. Major Depression - How to Cope?

    Thank you, Barefut, for the nice comment/support. I look over the fence to your side, though, and see how blessed your kids are for what you're going through and raising them by yourself. Give yourself a hug and pat on the back, Lady!!! Hugs for everyone......... :emoticons-group-hug: Margaret
  6. Major Depression - How to Cope?

    Hi Everyone, Well, for what it's worth, Gareth's psychiatrist added another med (Wellbutrin), to his SSRI, due to the fact he's been slowly getting worse this past month. :( :( She said it's due to the holidays and seasonal depression. She told me that, unlike women, besides shutting down/withdrawal, men also show an increase in restlessness/irritability/anger issues......and, he sure has had those problems this past month. It's been the Dr Jekyll/Mr Hyde persona lately. :( Thank you, everyone, for all the insight to this. Like I have said before, I know that autoimmune issues can affect the brain, but it's helpful to read that others are struggling with this, too. Take care, Everyone, Margaret
  7. Major Depression - How to Cope?

    Shelley , Thank you, for that insight and advice. I will start to encourage Gareth more often when he's really down....especially telling him how * I need you* to ...... Happy New Year to everyone and best wishes for ALL of us!!! :emoticons-clap: :emoticons-clap: Magaret Mom to Gareth, 24 years old, DS/ASD/OCD
  8. Major Depression - How to Cope?

    Hi Barefut , Yes, Gareth has had horrible issues with major depression since diagnosed with scleroderma/UCTD. The hardest part for me is trying to decide if it's depression related or something else is going on. We were told to get the *blue bulbs* for ceiling lights and one of those fluorescent bulbs for by the table, to simulate sunshine. I don't think they help any!!! He's also taking an SSRI but we can't raise the dosage above 10 mg/day due to side affects. It's hard, Lady!!! I'll keep you in my thoughts. Take care, Everyone. Margaret
  9. A Happy Holidays

    Hi Everyone, I just want to wish all my cyber friends, and your families, a wonderful Holiday. Thank you, once again, for a year of caring and support. May your New Year be a good one with stronger health and less pain. Margaret Mom to Gareth, DS/ASD/OCD
  10. Just want to say thank you

    Hi , I'm not sure if I welcomed you before, but *hello* and best wishes for this Holiday season to you, too. :) Six years ago, my son was 18 years old, when hit with esophageal dismotility and other aspects of sine scleroderma/UCTD. One of the worst issues we had to deal with was the autoimmune induced depression. The same changes occurring in your body can also affect the brain chemistry. Exercising increases Endorphins, which make you feel better and have a good outlook on life. If you should ever feel that going to the gym is not having the same affect, or you decide to stop at the gym, please don't hesitate to seek professional/medical intervention for possible depression related to the autoimmune issues. :emoticons-clap: Have a safe, fun, and relaxing Holiday season & Happy New Year to all Take care, Everyone. Margaret
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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