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Margaret

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Everything posted by Margaret

  1. Margaret

    Going off Plaquenil

    Hi Shelley, To be honest, I can't tell. He's still in pain but I wouldn't say it's any better or worse. Been researching doctor website; I know, wrong way to go, but I Googled *chronic pain in arms, legs, hips, lungs, and eyes*. Guess what popped up repeatedly: Fibromyalgia. :( :angry: We have an insurance mess right now to deal with since Pennsylvania is switching their Medicaid program around and Gareth's secondary insurance is through them. We will have to find numerous new specialty doctors -- major bummer!!! One of those will be a new rheumatologist -- second major bummer. I did hear back from Dr Medsger's nurse and she said to call to schedule an appointment when we have things in order, insurance wise. I'll keep you all posted. Take care, Everyone. Margaret
  2. Margaret

    Going off Plaquenil

    Hi Sweet, How are you doing? You don't chime in very often...miss ya!!! I'm trying to get Gareth into Dr Medsger, but PA is switching insurances and it will be a while to do so. I wanted the rheumatologist to raise his Plaquenil since he's showing + SSA, + SSB, and + Jo-1....all while being on the Plaquenil!!! She says that since his ANA came back negative, his body might be reacting to the Plaquenil. Muscle weakness/pain is listed as an adverse affect for it. This is a trial period...a wait and see what happens period...a *practicing* medicine period!!!. :emoticon-dont-know: Take care, Everyone. Margaret
  3. Margaret

    Sclero doctors

    Hi Everyone, I think it's time to take Gareth to visit Dr Metzger, in Pittsburgh. He hasn't been in 6 years and is having numerous medical issues. When I went to the Sclero list for specialists, to get the phone number, etc, he's not listed. Does anyone know if he's still taking sclero patients? Has anyone been to see him lately? Thanks, Margaret
  4. Margaret

    Sclero doctors

    <<maybe they haven't bothered to prove they are dry with a Schirmer's test.>> Hi Shelley, Gareth flunked the Schirmer's test a couple of years ago. He goes in tomorrow, to the eye doctor, for his yearly exam. Under Gareth's medical health history page, they have listed Hypothyroidism, CREST syndrome, Diffuse diseases of Connective tissue (???), RNA-Polymerase 1/111 +, ANA +, Restrictive lung disease, Dysphagia, GERD, and high IgA level. This would be information put in by his rheumatologist, primary care physician, and cardiologist since they are all with the same medical group. Another medical group handles all his immune deficiencies....Ig G 2/4 and MBL deficiency. Thanks, Lady Take care, Everyone, Margaret
  5. Margaret

    Daughter with New Diagnosis

    Hi Virginia, Welcome to the forums and sorry to hear about your daughter's diagnosis at such a young age. My son started down this autoimmune nightmare at the age of 18. He's 24 now and I would have to say that the fatigue and pain are the constant stressful issues for both of us. He was put on Plaquenil 6 months after diagnosis and his esophageal dysmotility and restrictive lung issues eased up. Take care, Everyone. Margaret
  6. Margaret

    Sclero doctors

    <<He explained that the terms are basically the same, but doctors often use SICCA to mean that the Sjogren's is secondary to another illness, and they use Sjogren's if it is the primary illness.>> So, the Sjogren's is caused by the UCTD (thus secondary) or the Sjogren's is the second(ary) autoimmune issue? :emoticon-dont-know: :emoticon-dont-know: Either way, he was diagnosed with SICCA a couple of years ago, by his rheumatologist doctor. She never told me that the two were interchangable and that there were other issues with SS that I never knew about. I just (wrongly) assumed it was only the dry eyes and dry mouth. I'm sloooowwwlllyyy learning............ :emoticons-yes: Hugs back to ya, Lady......... and !!! Margaret
  7. Margaret

    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
  8. Margaret

    Sclero doctors

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

    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
  10. 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
  11. Margaret

    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
  12. Margaret

    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
  13. Margaret

    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
  14. Margaret

    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
  15. Margaret

    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
  16. Margaret

    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
  17. 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
  18. 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
  19. Margaret

    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
  20. Margaret

    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
  21. Margaret

    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
  22. Margaret

    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
  23. Margaret

    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
  24. 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
  25. Margaret

    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
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