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Everything posted by Margaret

  1. 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
  2. Jennifer's Getting Married Tomorrow!

    Jen......Congratulations on your wedding tomorrow!!! Margaret
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. Got Test Results

    Hi Nan , Glad to hear the results were good. Good luck for the Endoscopy tomorrow. Margaret
  17. 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
  18. 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
  19. 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
  20. Isn Celebrates 5th Anniversary!

    Hi Everyone....Congratulations!!! I have only been a memeber for a month but want to say that I have learned so much and apprectiate all the hard work put into this very, educational site. I would have been totally lost without having the 'Forum' to ask questions and get back such useful informaton. It has trully been great. Take care, Everyone. Margaret
  21. Tests For Collogen

    Hi, Everyone.....got another inquiry. With the X-rays, CT scans and MRI's.....do they show collogen? I mean...do they show that it is harden and causing problems in the hands, rib cage, etc. You would think with all the modern medicine, there would be a definitive way to diagnosis scleroderma. Besides physical hx., blood work and these scans is there any definitive method to 'see' the harden collogen? Take care, Everyone. Margaret
  22. Sclero Docs

    Hi, Everyone.....I just had my son to his primary care physician to discuss the past 3 months. He sees no reason to wait till Feb's blood work comes back and then another 2 weeks to see the ped rheumatologist again. He suggested getting him in to a sclero spec now. We live in SE Pa. The ped rheumatologist doctor suggested Dr Medsger in Pittsburgh. One of the other moms said they go to a juv. sclero spec in NYC.....any name/hospital with that info? What about Thomas Jefferson in Philly....it's under the spec list here. Does anyone know/go to the doctor there? His primary care physician said to consider John Hopkins but that is not listed as a spec. center. Philly is only an hour, JH's is 1 1/2 hrs, NYC and Pittsburgh would be closer to 4 hrs each. Driving would not be an issue....just want some info on the centers/doctors......patience is a necessity with my son!!! Take care, Everyone. Margaret
  23. Sclero Docs

    Nan and Sammie....thank you for the information on JH. Right now, we're in another 'wait and see' period till the blood tests are done in Feb. Gareth's primary care physician wants me to go to a specilaist now, but the rheumatologist doctor and the juv. spec. in NYC said to wait. On Fri, he got a heart monitor for a month to r/o arrythmia. He keeps telling me his heart hurts, but I think it's his esophagus. I really don't know what is hurting. I have been reading all the posts that I can and so many of you talk about pain.....maybe it's his sternum/rib cage that is hurting? That is where he is always pointing. Take care, Everyone. Margaret
  24. Gastric Emptying Test Results

    <<I hope you don't mind me asking this. Does your son have Autism and Scleroderma? If so, that's not fair!!!!! >> Hi Nan , Yes....he was born with Down Syndrome, dx'd with Autism at age 5, and is now being worked up for sine Scleroderma. But.....he is a very high functioning kid.....just doesn't have much speech to relate his aches, pains, worries, etc. If I could take away the sS from him and put it on myself, I would do it tomorrow. You are right....life isn't fair, but our faith keeps us going. My question was....did you start with esophageal dismotility and then went to the watermelon stomach and the stomach not emptying? Or....do you just have watermelon stomach/stomach dismotility and your esophagus works fine? We know Gareth's got the esoph.dismotility....just curious as to whether the stomach issues are the next possible sequence of events for us? Take care, Everyone. Margaret
  25. Getting To Know You - Archives

    Hi Everyone....I am the Mom of a DS/Autistic son, Gareth, who is 18 years old and being worked up for sine Scleroderma. We live in Lancaster Co., Pa. Our 'adventure' started last Oct. when a swallowing study showed esophageal dismotility. Followup Anti-RNA Polymerase 1/111 blood work was positive, his ANA was positive.....along with his high sed rate. Other issues we are having include the 'zoning out', loss of voice or weak voice at times, fatigue, sloooooowwwwwww walking (evolution goes faster!!!) esphageal/throat pain, and drop in cognitive abilities at school over what he had been able to do. Personally, I don't think it's a drop in ability, I think it's because he just feels so badly and doesn't want to do the work!!! So far, X-rays have showed no Pul. fibrosis and we are still waiting to get in to see a pediatric cardiologist to r/o any problems there. His ped rheumatologist wants me to take him to Pittsburgh to Dr Medsger. He is having another series of blood work the beginning of Feb to see if the test results show the same. He's living on OTC pain meds....the only thing the rheumatologist wants him to have....for now. I have learned so much from this site and appreciate the friendliness of everyone. Take care, Everyone. Margaret