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Everything posted by Margaret

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. Jennifer's Getting Married Tomorrow!

    Jen......Congratulations on your wedding tomorrow!!! Margaret
  9. 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
  10. 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
  11. 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
  12. Concern For Others

    Hi, Everyone....I realize I am fairly new to this forum, but I am upset by the news of Janey and now SSakar has stopped posting. Besides those invovled with the site....Shelley, Janey, Heidi, etc....is there a 'phone support group' where people can call and check on each other. I realize we are scattered around the world, but if someone lives in your state/area, perhaps there is a way we can keep in touch in situations like these.....or is that being too nosey? Just curious. I am the kind of person who would call someone just to find out if everything is OK. I know that on the DS/Autism support site, many of us have become close cyber friends and relayed phone numbers whenever a crisis happened just to keep everyone posted.....kinda like family. Take care, Everyone. Margaret
  13. 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
  14. Nailfold Capillaroscopy

    Heidi , Wow...those pictures weren't anything like the doctor explained. I think sometimes the doctors wrongly assume we have no brains at all. Or....maybe they are just so use to putting everything in terms that they 'think' the normal population will understand!!! Great site.....thanks!!! Margaret
  15. Methotrexate

    Hi Afii , Just wanted to welcome you to the forum. I am the Mom of an 18 years old son, Gareth, who is being worked up (extensively) for sine Scleroderma. His biggest problem right now is the esophageal dismotility, fatigue, and dysphonia....his voice goes out on him. He does not have any skin symptoms of Scleroderma. Take care, Everyone. Margaret
  16. Nailfold Capillaroscopy

    Hi Betty , Gareth's rheumatologist checked G's fingers for Nailfold cappillaries. All he did was put some clear gel on the top of his fingers and looked with the same light that he uses to check ears/mouth. He said G's looked okay. He drew out a design on paper. If the cappillaries are normal he said they should look like consistent 'lines' lllllllllllllll. If they are abnormal, then some 'lines' are missing.....ll ll llll l ll.....indicating problems in the vessels. Not sure if that is what you are asking about. Take care, Everyone. Margaret
  17. Esophageal Spasms Or Heart Palpitations?

    Hi Barefut.....Gareth just got done wearing a heart monitor for 10 days to r/o arrythimia because he said his heart 'hurt' or his carotid artery would be 'thumping' really hard. Haven't heard anything back from the card, so I guess it wasn't anything severe. This really upsets him, but, as usual, I don't get any info from him except that it 'hurts' or it's 'thumping'. Is that how you feel? Someone mentioned awhile ago that esophageal spasms can hurt. Since G's has esoph. dismotility, I figured that is what he is feeling. I so appreciate the info you guys share.......it helps me so much with understanding Gareth. Take care, Everyone. Margaret
  18. Scleroderma Lips

    <<Oh, and another fun thing, sometimes I drool. Yep drool. It's subtle right now and not very often but I can't wait til I need to wear a bib! >> Hi Barefut......I had to chuckle at this. My son, Gareth, has been drooling horribly the past few months. We tease him about being like his Newfie!!! I am also glad someone mentioned something about the lips. Gareth's upper lip seems to be disappearing like it's going to the inside of his mouth. I didn't know that was Sclero related. Jennifer.....sorry you're feeling so down about your looks. You have got to be such a wonderful, sweet person on the inside. Aren't you the one that is getting married? Sorry, being new here, I forget all the different lives invovled. Take care, Everyone. Margaret
  19. My Three Week Nightmare

    Hi Janey , I should have read this first before e-mailing you privately about the Medscape article. That is so scary.......please, put yourself number 1 on your list and take care of yourself. You are in my thoughts. Margaret
  20. Great News Today

    Lisa , So happy for you and your family. It's good hearing something positive about insurance companies these days. Best wishes that your daughter has a speedy, uneventful recovery. Take care, Everyone. Margaret
  21. Another Test Over/ Egd

    Nan , So glad the endoscopy is over. Can't help you with your questions but you're in my thoughts. Hope you feel better tomorrow. Take care, Everyone. Margaret
  22. Got Test Results

    Hi Nan , Glad to hear the results were good. Good luck for the Endoscopy tomorrow. Margaret
  23. Who Classes

    Hi JJ....I was listing the WHO Pulmonary Hypertension Diagnostic Classifications. I think the key word here is 'diagnostic'......not functioning levels. Sorry....didn't know there was a difference. If you can pull up Medscape articles then read the one from last week on 'Vascular Complications of Systemic Sclerosis'....just Google that article and it will come up. That's where I pulled those Classes from. It's a very educational article!!! Margaret
  24. Who Classes

    JJ....I just read a medscape article on the vascular complications of SS. What I gathered from the article is that The WHO classifications have nothing to do with the severity of the PH, but it is just the doctors trying to get a common understanding of each person's disease for better research/effective communication. Here are the classes: Class 1 Pulmonary Arterial Hyperplasia Class 2 Pulmonary Venous Hyperplasia Class 3 PH with Lung Diseases/Hypoxemia Class 4 PH due to Chronic Thrombotic and/or Embolic Disease Class 5 Miscellaneous Take care, Everyone. Margaret
  25. Getting To Know You - Archives

    <<Now for the fun stuff. I live in my dream home here in Vegas with my two best friends, Tallulah and Sachi, my two 4 year old Newfoundlands. They are big lovable cuddle bugs that I don't know what I did without before I had them.>> Hi Karen.....welcome to the forum. We have one Newfie left....out of two!!! Maggie, was our 8 years old black Newf, and she died a year ago May. We also have a 10 (!!!) years old Landseer named T-Rex. He's nothing but a 150# rug anymore and sleeps all day sprawled on the kitchen floor!!! Best dogs in the world.....except for the fur balls!!! We are new to this forum, too, and our bio is a couple above yours. Take care, Everyone. Margaret and Gareth