Margaret

Members
  • Content count

    1,022
  • Joined

  • Last visited

Everything posted by Margaret

  1. Hi Everyone, I need to add to the *Chronicles of Gareth.* :unsure: His CT scan this past Wednesday put us back to step one....or two. His pulmonary doctor did chime in on Tuesday and said he *thought* it was probably pleurisy that is the culprit. Gareth has been complaining all along that *monia back.* He told me that after you have pneumonia several times, that pleurisy is common. Well, why didn't his primary care physician know that! :emoticon-dont-know: He also said it won't always show up on X-rays or scans but is by *process of elimination*. I guess that is why they all *practice medicine.* :excl: The CT scan did show *edema around the small intestine* but I will have to wait till next week, when the Gastro doctor gets back from vacation, to discuss the significance of that. Of course, I just HAD to Google that! Scleroderma is listed as a possible cause. We shall have to wait and see what the doctor says, though. Take care, Everyone. Margaret
  2. Hi Everyone, Well, the good news is that the doctor found no sign of disease such as GERD damage, Watermelon stomach, ulcers, blockages, etc. :emoticons-yes: He did biopsy an area of the small intestine that he said had *excess lymph fluid around it* but that alone would not be causing the pain Gareth has. The bad news is that we are back to step one since he's still in pain. :( Next week, we will have to get him scheduled for a CAT scan. Thank you, for your thoughts today. I'll keep you all posted. Takew care, Everyone. Margaret
  3. Hi Everyone, Thanks for all the responses and it seems like we may be on the right track. Gareth's GI doctor got right on it and ordered an Endoscopy for tomorrow morning, 7/15. But my hubby got a call this afternoon, while I wasn't here, and the hospital told him to *hold off on bringing Gareth in till they call in the morning.* It seems he has been switched from the 10:15 Endoscopy schedule to the main OR schedule! :emoticon-dont-know: I'm whipping off a million questions and he just says *that's all they told me.* Well, don't you know to ask questions?! :glare: Anyways, hopefully, we will get some answers tomorrow. So, please, keep Gareth in your thoughts for tomorrow. Take care, Everyone. Margaret
  4. Hi Janey , I am surprised that this article didn't mention Gout. It is considered one of the most painful forms of arthritis. Take care, Everyone. Margaret
  5. Hi Janey , Gareth had his yearly physical today and the doctor told me he needed his DPT shot updated. I asked if that was a good idea with his immune system and he said it was the best way to go. Gareth got his updated today!!! I know that in March, I needed a Tetanus shot, and found out that they have added Pertussin to the Tetanus shots for adults. Take care, Everyone. Margaret
  6. Hi Lori , Please, don't take this as a *don't try this med* but Gareth had a horrible reaction to Lyrica when the doctor added it to his Dilantin, for siezures. Within 2 weeks, his thyroid shut down, his liver numbers skyrocketed, and he was hallucinating. He'd look right at me in total fear and say *I want my Mom*. To him I was a robot trying to kill him!!! You will be able to voice the fact that the med isn't doing you well....he couldn't. Just be careful....like you said, it's got mixed reviews. Take care, Everyone. Margaret
  7. Hi Miocean , Thanks for sharing an uplifting, happy message! Nothing like going *straight to the top* for the best care!!! :emoticons-line-dance: Take care, Everyone. Margaret
  8. <<I have about two years left to live so I will be going wild and making the most of it.>> Lynn , First, having a positive outlook on life is fantastic start. :emoticons-yes: Secondly, two years is a long time, medically speaking, and many break throughs could be around before you know it. I will keep you in my thoughts. Take care, Everyone. margaret
  9. Hi Mando , I, too, was surprised when my son was diagnosed with (only) UCTD. He had the + ANA, + AntiRNA P 1/111, esophageal dismotility, restrictive lung issues, BUT no Raynaud's, capillary changes, or skin issues at the initial onset. Like Shelley has posted in the past, though, it is still a (complex) medical diagnosis. Are you on medication? They started Gareth on Plaquenil 9 months after the intitial onset and he was feeling a lot better 2-3 months later. Like you, he still has some esophageal dismotility, mild Raynaud's, SICCA, and major fatigue issues. Take care, Everyone. Margaret
  10. Hi Miocean , I'm late in responding to this but just wanted to say that you're in my thoughts. Depression hit Gareth hard when first diagnosed with Sclero/UCTD. I would have to say that depression and fatigue are the two biggest battles that he faces since diagnosed. He's on a low dose of anti-depression med now and the doctor won't take him off it for fear that he regresses into another severe episode. Take care, Everyone. Margaret
  11. Hi Everyone, This caught my eye since Gareth is + for Anti-RNAP 1/111....and the titers keep going higher with each testing. It would be nice if they listed the malignancies that they see with scleroderma patients....at least I could be on the lookout for something!!! :( Take care, Everyone. Margaret
  12. I am saddened to read this. Is there any chance for a transplant? I know that a couple of our cyber friends have been through that, but not sure if any were for a lung transplant. I will keep you in my thoughts. Take care, Everyone. Margaret
  13. <<Talk about mama guilt. >> Hi Lori , I am so sorry to read this and I do understand the *mama guilt*. Gareth was diagnosed at age 18, but I don't have any diagnosis of autoimmune illness. Why him? :angry: My dad had rheumatoid arthritis (RA) but that's the only autoimmune disease we can come up with in our family. I had never heard of Scleroderma or UCTD before. I hope they can come up with some med to help her....like the Plaquenil that helped Gareth. Take care, Everyone. Margaret
  14. Hi Sacha , I took a deep breath on reading about Katie. I am glad to hear that she's doing better. :VeryHappy: My own son was diagnosed, at age 18, with the esophageal dismotility, but hasn't had to have a feeding tube. Please continue to keep us up to date on her health. Take care, Everyone. Margaret
  15. Hi Everyone, It's been a while since I have needed help but tonight Gareth told me his throat hurt again....it's been sore on and off for several months, along with ear infections. He's been treated with antibiotics and OTC allergy meds but tonight he told me "Scleroderma back (in his) throat". What would that be? Is that Parotid gland near the throat area....isn't that the one that gets swollen and sore with Sjogren's? He's due to be back in to his primary care physician this Friday for an ear recheck so I can ask questions then.....if I know what to ask for!!! :emoticon-dont-know: I'm wondering if these recurrent ear infections could be sclero related, too? Thanks Everyone, Margaret PS....for the new people, my son is Down Syndrome and Autistic, with very limited speech. I've been coming to this site for help and answers for almost 5 years!!!
  16. <<Did he by any chance mention avascular necrosis? I believe (could well be wrong, of course) that collagen-vascular diseases are frequently listed as one possible cause of avascular necrosis (and femoral head sclerosis) because of the impairment of the blood flow to the joint. >> Jeannie....yes, he did!!! He whipped off AVN like I should know what it meant.....I didn't!!! :emoticon-dont-know: Thank you.....now I will know what to ask the Orthopaedic doctor. Anyone else with hip problems caused by their Scleroderma? About the sore throat....that is why he's referring him to the Gastro doctor. He *thinks* it's reflux. I am glad he likes Gareth!!! :VeryHappy: Take care, Everyone. Margaret
  17. Hi Shelley , I *think* this doctor is overwhelmed with Gareth!!! :unsure: It's a new primary care physician and he started with ear/throat infections (Feb&March) and went to knee/hip pain that was X-rayed a couple of weeks ago. He wants him to be seen by a Gastro doctor since he hasn't had an Endoscopy in over 2 years....Gareth's other Gastro doctor moved and I haven't felt the need to track a new one down. He's sending Gareth to the same Gastro doctor that he uses....a good sign, I guess!!! On to the hip X-ray.....sclerosis of both femoral heads. I asked if this sclerosis had any connection with Systemic Sclerosis and he "didn't think so." He's setting up an appt with an Orthopaedic doctor to discuss pain management and *drum roll* possible hip replacement surgery!!! He's ONLY 22 years old!!! I didn't find anything in the Medical site about the two being related.....anyone else have hip issues from sclerosis? Thanks, again, for all your help and thoughts. You guys are the backbone I need to get through all this!!! Take care, Everyone. Margaret
  18. Jeannie....thank you, for that link on Salivary glands. That was very informative. Shelley.....he doesn't look like he has the mumps or that area is swollen. I was thinking thyroid, maybe, but I'm not a doctor. Does thyroiditis hurt? His discomfort/pain seems to be in the neck area itself, between his vocal cords and mouth. :unsure: He's perforated his left ear drum twice since December and his strep tests always comes back negative. He's been, pretty much, on antibiotics since December. He never tells me when he has an ear ache, so I don't know until he perforates it. :excl: I was just so surprised that he said "Scleroderma back". I will ask the primary care physician to run blood work tomorrow.....thyroid, sed rate, etc. Maybe that will shed some light on what's going on. Thanks for all the help, Everyone. Margaret
  19. Hi Punydeb , I just wanted to say *hello* and tell you that UCTD is a definitive diagnosis, too, just like Jeannie said. My own son, at age 18, had all the symptoms of sine Scleroderma almost 5 years ago --- including the + blood work for ANA and Anti-RNA Polymerase 1/111, but still got the diagnosis of UCTD. He also has the symptoms of mild Raynaud's and SICCA. I don't look at his diagnosis of UCTD as being any less serious of a disease than sine Scleroderma. They treated him with Plaquenil and his major symptoms (esophageal dismotility, restrictive lung disease, vocal cords, etc) have lessened. Keep chiming in here and others will help as much as they can. Take care, Everyone. Margaret
  20. Hi Colin , I see you're new to the site....welcome. It will be 5 years, this Nov, that my son, age 18 at the time, was diagnosed with sine Scleroderma based on + ANA (speckled pattern,diffuse) + AntiRNA Polymerase 1/111, esophgeal dismotility, restrictive lung issues, chostocondritis, hardening of the vocal cords, 20# wt loss, and major fatigue. Needless to say, his senior year in HS was a blur. Because he only had the esoph. dismotility, no skin issues, and none of the other CREST symptoms, the doctors were at a loss as to what to do with him!!! Fortunately, they did start him on Plaquenil 9 months after the initial symptoms started and he is doing fairly well today. The esophagus loosened up and he only has dismotility in the lower 1/3 part but it doesn't seem to bother him much. They eventually gave him the diagnosis of UCTD, not sine Scleroderma. Last winter, he did develope Raynaud's but it isn't too bad and I rarely saw color changes this winter. He has also developed dry eyes and dry mouth (SICCA)but that can be from medications or Sjogren's. Funny but the med for Sjogren's is Plaquenil and he's been on it for 4 years now. I understand the fear you may be feeling --- I thought I would lose my son at an early age, but this site is so full of compationate, understanding, and educational people that I soon realized much of what was out there in cyber space was wrong or outdated. I would have to add that the biggest problem *I* had, as his Mom, was when they diagnosed him with autoimmune induced depression on top of all the other symptoms. Please, keep this in mind because the doctors told me that the same autoimmune responses fighting the body also can affect the chemicals of the brain. Keep posting, keep asking questions, and keep a positive outlook on life. Take care, Everyone. Margaret
  21. Hi Everyone, Thanks for those links, Shelley. I guess I should go to the Medical section more often. :emoticon-dont-know: Gareth (because of his autism) has been tested so many times over the years for CD, both by blood work and biopsy. He has always tested negative. My biggest problem with even trying to implement the GFD for him is that there are so few foods that he eats. Take care, Everyone. Margaret
  22. Oh, Shelley......thanks for putting a big smile on my face this morning!!! Take care, Everyone. Margaret
  23. Hi Christine , A friend of mine (in her mid 50's) was diagnosed with MS several years ago and decided to go on a strict diet of *normal foods*, as she puts it. She dropped all prepared foods that she couldn't pronounce the ingredients (chemicals and preservatives), dropped all drinks with artificial sweeteners and Asparatame in them, and went organic when she could afford the produce. She has done remarkedly well since doing that and has not progressed since diagnosed. I don't know if MS is considered an autoimmune disease or not, but just eating healthy can be very beneficial to everyone. So many of us have grown up with prepared food that the idea of cooking a *home cooked meal* is very daunting.....it doesn't need to be. Take care, Everyone. Margaret
  24. Hi Christine , Gluten free and casien free diets are very popular among many parents who have autistic kids.....buying into the gut/brain concept. It can be a very expensive diet and there are blood tests that can be done to find out if you have CD. The *Golden* test is a biopsy, by Endoscopy, BEFORE you start the diet because that will show changes in the duodenum consistent with CD. If it is positive for CD, then going on the diet will allow the mucosa to return to normal. I have not read anything where going on the GF and/or CF diet has helped with autoimmune diseases in general. Take care, Everyone. Margaret
  25. Hi Miocean , I'm chiming in late here, but wanted to say *Congratulations* :emoticons-line-dance: I love the new emoticons, too!!! Too many good ones to choose from!!! :emoticon-dont-know: Take care, Everyone. Margaret