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Margaret

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Posts posted by Margaret


  1. 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


  2. <<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


  3. 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


  4. 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


  5. <<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


  6. 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


  7. 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


  8. 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


  9. <<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


  10. 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


  11. Nan.....my heart goes out to you. I remember when my son got the 'official' dx of Autism, I broke down and cried.....even though I 'knew' it long before that 'official evaluation.' You say your stomach has delayed emptying....did it start with your esophagus? Gareth's esophagus doesn't empty into the stomach. Is that the next 'step' when the stomach doesn't empty or is that just your symptom of scleroderma? What were the symptoms or could you feel food left in your stomach? Just curious as I am learning all this sclero stuff myself to better understand how Gareth feels.

    Take care, Everyone.

    Margaret


  12. Hi Sam ....... Is it back pain from muscle spasms? You can get a TENS unit that send stimuli through the muscles to stop the spasms. If you go to a PT/chirop they should be able to get you one through insurance. My son also goes to sleep each night laying on a heating pad because of back pain. I did not know it could be related to the scleroderma. I just assumed it was weak muscles.

    Take care, Everyone.

    Margaret


  13. Janey, Miocean and Gidget......thanks for the responses. I have heard privately, too, and it looks like any one of the four would be an excellent choice. TJ would be the closest. After e-mailing back and forth with Dr Lehman (NYC) we are in a 'wait and see' mode....again....till after the blood work in Feb. The plus side for my son is that both the CT scan (done this past Mon) and X-ray showed no pul. infiltrates or fibrosis. Gastro doctor still can't figure out the bulge in the esophagus, though.

    Take care, Everyone.

    Margaret


  14. 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


  15. Elehos and Kathy ,

     

    Thank you for telling me how you feel...whether it is painful, etc. Knowing that fatigue plays a part will help me in keeping an eye on it. I told his 1:1 aide about your responces. She's been with my son for 3 1/2 years and is like a second Mom to him at school.

     

    Take care, Everyone.

    Margaret


  16. Thanks Shelley. I am amazed how any one of you can pull up a website for someone asking for info!!! This is the most organized forum I have been to. We have an appt with his primary care physician on Thurs. to go over 'stuff' from the past 3 months.

    Take care, Everyone.

    Margaret


  17. Hi, Everyone....Does anyone else lose their voice...on and off throught the day...and have to whisper to be heard? Does anyone wake up and have absolutely no voice....not even a whisper? This is another problem my son has had for a couple of months and I haven't found any info on it. If I ask him 'does it hurt' he will shake his head 'no'. At times during school, his aide will have to struggle to hear him or he writes down on paper what he said. He will be going through the day and then, all of a sudden, he will say "it's back"...meaning his voice. Is there a Scleroderma reason for this and is it painful?

    Take care, Everyone.

    Margaret


  18. Hi, Everyone....would it be possible to get some options on what they use for pain meds for esophageal dismotility? My son 'shuts down' every two or three days because he 'hurts'. I give him 600 mg Motrin all day and Tylenal at night. Today was a 'bad' day. I feel so useless for him.....he went to bed laying on the heating pad because he has hurt all afternoon. We ate lunch out. All he had was a chicken sandwich and FF. I gave him Chicken Noodle soup and applesausce for supper but he went to bed at 7:30 because he hurt so bad. I feel like such a smuck for a Mom....there is nothing I can do for him. I called his ped gastro doctor 4 times last week and never got a return phone call. Perhaps if I had some suggestions for med, I could call his primary care physician and get them faster.

    Take care, Everyone.

    Margaret


  19. Hi Jennifer...I am new to this forum but do want to wish you well with your upcoming marriage. Your fiance must be a great guy to propose knowing your illness and complications that can arise. Congratulations and best wishes to both of you. Take care, Everyone.

    Margaret

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