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Margaret

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Everything posted by Margaret

  1. Margaret

    Gareth Update

    Hi Everyone, Well, our long awaited visit to the Sclero specialist in Pittsburgh was Wed. and I am so disappointed. Basically, yes, Gareth has Esoph dismot., 18#weight loss, restrictive lung disease, and positve blood works. But.....he is not making any diagnosis because he doesn't have the Raynauds or skin involvement. He took 5-6 tubes of blood and wants to run his own tests and will get back to us. For this, we drove 5 hrs!!! No medications or nothing. He sooooooooooo downplayed the whole Scleroderma disease itself. Sclero doesn't cause pain.....hear that you guys!!! I thought to myself, he should read this site someday!!! Sclero doesn't affect the voice or the brain/cognitive functions. Esoph dismotility is a nuicence but not life threatening. Obviously, he hasn't had a hard boiled egg stuck in his throat all day!!! I don't know.....very bummed when we left there. So, now we will wait a little longer and see what his blood tests show. He did say that Gareth may be in pre-Sclero stages. His nurse was the nicest lady, though, and told me that sclero pts do have vocal issues.......go figure!!! Take care, Everyone. Margaret
  2. Margaret

    Hallucinations

    Pamela , I was thinking the same but the only thing he has been taking is Motrin and Tylenol....all within the recommended dosages, too. Neither one of them list hallucinations as side effects, though. His primary care physician is really good....I am sure he will run a gamet of blood tests tomorrow. I was really hoping someone could come up with an article or something....... Thanks and take care, Margaret
  3. Margaret

    Gareth Update

    Jennifer , That was another issue that he was surprised about....that Gareth has no joint pain/issues in his shoulders and hands. He had to be mistaken about the 'no pain' issue. Maybe he had other things on his mind. He checked G's arm/shoulder movements and kept asking him if it hurt!!! I don't know.....still waiting for his phone call. I know I heard him right, because I immediately thought of all of you and how much pain you guys are in. I am keeping Gareth home tomorrow because the kid is acting schizo. He's swatting at bugs that aren't there and lashing out at 'things' behind his back. I am going to take him in to his primary care physician to check his ears and eyes. Anyone who has any suggestions as to what it can be, please feel free to chime in!!! Of course, there is no way for him to tell me what's going on!!! Take care, Everyone. Margaret
  4. Margaret

    Gareth Update

    Janey , Sine Sclero is what the local rheumatologist diagnosed him with in Dec after the blood work and espoh. dismotility. I guess since doctor said that diagnosis is 1/10,000 people, he's going to be sure. I think he mentioned that he has seen 2 in his years. Take care, Everyone. Margaret
  5. Margaret

    Tender Spots

    <<That's completely off-topic of your question, but you know how it is, sometimes I start typing and my fingers just don't know when to shut up. Warm Hugs, Shelley Ensz>> Oh. but Shelley....those fingers hold sooooooooo much useful information!!! Take care, Everyone. Margaret
  6. Margaret

    Dry Mouth

    Hi.....Gareth doesn't have dry lips as bad as the area around his mouth which is red and chapped this winter.....something that has never happened before. I have been smearing Neosporin on it after he goes to sleep since he won't tolerate lotions, smells, etc. while awake. Also, I notice two white spots under his lower lip skin.....calcifications??? Is that the way they come through? Take care, Everyone. Margaret
  7. Margaret

    Raynauds Question

    Hi Barbs , We were at a funeral last month for my dear husband's aunt (90+years old) when he struck up a conversation with his cousin. Her husband has Raynauds and I spoke with him after the service. It was very interesting watching him during the service as he was one of the poll bearers and when he came in from the cold, he was holding and rubbing his hands. He showed me later how they had turned colors and hurt so bad. He was very helpful in giving info for Gareth. Take care, Everyone. Margaret
  8. Margaret

    Basal Cell Skin Cancer

    Hi Ani , I think you are spelling it wrong. It's Basel cell carcinoma. It's the most commonest from of skin cancer. Margaret
  9. Margaret

    Typical Age Of Dx?

    Hi Kelly , My son, Gareth, is 18y/o and was diagnosed last fall with sine Scleroderma after his swallowing study showed Esophageal dismotility. He's DS/autistic and was grabbing at his throat. He had also lost 10#'s since July without dieting. After the gastro doctor saw the esoph dism. he had blood drawn and Gareth had a positive ANA titer, high sed rate, and positive Anti-RNA Polymerase 1/111. Repeat blood work the end of Jan were also positive. He's had the dysphonia since Nov, fatigue, and major 'brain fogs' a lot of days. His Pul function test from Tues. shows restrictive pul disease. He's got an appt with Dr Medsger for March 7th. He has no Raynauds symptoms, skin or finger issues, or tet (spots). Take care, Everyone. Margaret
  10. Margaret

    Great News Today

    <<I hope Garce continues to have a safe recovery.>> OOPS!!!! Grace...so much for checking my spelling!!! M
  11. Margaret

    Great News Today

    Lisa , That is such good news. Isn't modern medicine wonderful?!?!? I hope Garce continues to have a safe recovery. Take care, Margaret
  12. Margaret

    Really Really Bad Day

    Hi Barefut , If it makes you fell any better, I also had a really bad day yesterday with a visit to Gareth's rheumatologist and reports from his PFT that he has restrictive lung disease. His rheumatologist. said Dr Medsger is 'big' on d-Penacilliam (sp) but from what I have read on that drug, it will either kill you or cure you. I wish I lived near you and I would reach out and give you a much needed hug of support. I went to the info on PFT tests and read up last night. His Pediatrian is the one who called me with the reports on his PFT and said he's glad Gareth has an appt with Dr Medgser. I can understand why you all have bouts of depression....I am getting so bummed myself and I don't even have Sclero. You are all in my thoughts. My heart goes out to all of you and your extended families. This disease is definitely one that affects every member of the family.....from those afflicted, to spouses and to young kids who don't quite understand why Mom can't do things with them. Take care, Everyone. Margaret
  13. Margaret

    Life Insurance With No Medical Exams

    Hi Jennifer , The Artisiens are an insurance group that will give policies to special needs/sick kids if you wanted a small policy for your daughter.....no medical history or exam is needed. They also have policies for adults and I do not know for sure, but I don't think exams are required. Take care, Everyone. Margaret
  14. Margaret

    Mind Games

    Hi Everyone....while we are on the issue of cognitive abilities or decreasing abilities, has anyone experienced unusual anxieties or fears along with their sclero. Gareth has come up with a few 'quirks' that can't really be explained......fear of the gym (he always loved PE), fear of going into/staying in church (he use to love church music), doesn' want the TV/sterio on. Just curious. It could very well be the autism.....it rears it's ugly head at times and shows some new, weird, extreme quirks. Take care, Everyone. Margaret
  15. Margaret

    Mind Games

    Hi Giorgigirl , I know that my son has shown a marked decrease in academics this past school year and when I asked his ped psychiatrist about it last Dec., he told me if he does have Scleroderma that it will only get worse. Even with Gareth's DS/Autism, he is a very high functioning kid academically, but those abilities are dropping very fast. He has told me 'I don't understand words.' The Sclero A-Z has some reports of decrease cognitive abilities. I don't think it affects eveyone, though. It's probably like all the other sclero stuff......everyone is unique in their disease. Take care, Everyone. Margaret
  16. Margaret

    Cobwebs On Face?

    Hi Everyone....a while back, when I first joined this site, someone mentioned the sensation of cobwebs on their face. Gareth has started to slap his face.....usually very suddenly and around his mouth. I ask him 'what was that for?' and he just gives me a 'lost look.' Is it an internal sensation or like something is on the skin outside? I wash his face with a warm washclothe but he keeps doing it. Take care, Everyone. Margaret
  17. Margaret

    Cobwebs On Face?

    Hi Kelly , Thanks for the response. My son was just diagnosed with sine Scleroderma last Nov after they found he had esophageal dismotility. He's 18 years old and has Down syndrome and autism. The autism limits his speach, emotions, pain, etc. I never know what is going on and how he feels. This site is a blessing for me because people tell me how they feel and I can relate that to Gareth. Take care, Everyone. Margaret
  18. Margaret

    Cobwebs On Face?

    Hi Sweet & Barefut , Thanks....I thought it was something to that affect, but I don't understand his slapping himself. I have been reading through so much in the medical section trying to figure out what is SS related. I came across some stuff on the Cognitive Impairments, too, that go along with SS and e-mailed them to one of his teachers who gave him detention the other day because he refused to read out loud in class. He told me 'I don't understand.' Like I said before, you guys are my voice to understanding this disease........you have no idea how much I apprectiate it. Take care, Everyone. Margaret
  19. Margaret

    Diffuse Systemic

    Hi Oddone , Your questions are very much like mine. Gareth is male, 18 years old, dx'd with sine Scleroderma in Dec. Having the positive Anti RNA Polymerase test is VERY depressing for me because of what I read. BUT......with the medical knowledge of today and keeping up to date on blood work, kidney function, etc, I am optimistic about his future. Since he hasn't got the skin problems, his symptoms started with the diagnosis of esophageal dismotility....already one strike against him. Take care, Everyone. Margaret
  20. Margaret

    Just Diagnosed

    Hi Steph-anne , Welcome to this group. You will learn a lot here and be able to go back to your doctors with useful information. My son is 18 and diagnosed with sine Scleroderma last Dec. Take care, Everyone. Margaret
  21. Margaret

    Jennifer's Getting Married Tomorrow!

    Jen......Congratulations on your wedding tomorrow!!! Margaret
  22. Margaret

    Update On Gareth

    Hi, Everyone , I got the long awaited phone call today from my son's ped rheumatologist doctor concerning the repeat blood work done the end of Jan. The Anti RNA Polymerase 1/111 is still positive and he still has the elevated sed rate. All the blood work for his kidneys, muscles and heart is in the normal range.....the doctor said that is a good baseline to start with. CT and X-rays for pul fibrosis is negative. He will have the Pul function test done next week....that should be interesting!!! Also.....he wanted me to call Dr Medgser and his nurse called back within the hour. He will be seen in Pittsburgh on March 7th. I have learned so much in the 2 months since I found this site and thank all of you for the support and understanding you have shown. I will continue to ask and listen to all your responses on pains, meds, etc., to help me better understand just what Gareth is going through. Take care, Everyone. Margaret
  23. Margaret

    Update On Gareth

    Hi Barefut....when I looked up the test the site I found said that Autoantibodies to RNA polymerases I, II and III are specific for systemic sclerosis (Scleroderma – SSc), particularly diffuse cutaneous SSc. It also said that these autoantibodies include a high frequency of heart and kidney involvement and poor survival 5 years after the first visit. His rheumatologist also said it is diagnosed of SS. It's the poor survival rate that always catches my eye. Some of you guys have said that you have had Sclero for 10-20 years......I want my son to have that kind if he has to have Sclero. Take care, Everyone. Margaret
  24. Margaret

    Got Out Of Hospital Today

    SSakar, it is so good to hear from you. I haven't been on this forum very long, but I was sure upset by your illness and lack of posting for a while. So glad that you were admitted and they are testing you. Gareth's esophagus doens't work and they told me there was nothing they could do about it. Maybe that is what the GI doctor is referring to? Do take care and get rested. Take care, Everyone. Margaret
  25. Margaret

    Concern For Others

    Hi Shelly.....it really is a shame our world has come to that, isn't it? I guess I am still on the 'naive' side of this cyber world!!! Thanks for the toll free numer and info for using it. Take care, Everyone. Margaret
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