Margaret

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Everything posted by Margaret

  1. Hi Jennifer , As much as you want to fight it and be strong, if you are under a lot of stress and pain (which you are) your body may be telling you the chemicals are off in your brain. That's the connection between autoimmune diseases and psychological problems.........straight from Gareth's psych. Stress and pain increase one chemical in the brain which decreases others that can lead to depression and anxiety. You have no reason to be ashamed about it.....you have no control over it. I know several women on another list that are on SSRI's and others are on something called Wellbutrin (sp). Take care, Everyone. Margaret
  2. Hi Sweet , Gareth's gastro doctor put him on Miralax a month ago and he wasn't having any bowel problems. He wants to make sure it stays that way.....I guess. I mix it with his milk in the morning. Take care, Everyone. Margaret
  3. Hi Jennifer , I don't know if it is fat disappearing or what. Gareth doesn't have the skin issues but his collar bone sticks out so far now.....it's like he's got these two hard boney spurs sticking out. He's lost 20 pounds, but even skinny people don't have bones sticking out like his. It's like all the skin has been pulled down from his neck area towards the inside of his body.....weird looking. Take care, Everyone. Margaret
  4. Hi Everyone, Is it just me or wishful thinking? Gareth started Plaquenil 10 days ago and I swear there is a difference already. He didn't sleep/nap all weekend like he usually does and is actually turning on the TV and watching again. He still complains of his 'hard stomach' and we're trying to get the ENT doctor lined up with the gastro doctor for another exploratory on his vocal cords, esophagus and colon. Take care, Everyone. Margaret
  5. Barbs , Oh, my.......ouch!!! I am such a wimp....I doubt I could have done that!!! Hope you're feeling better tomorrow. Take care, Everyone. Margaret
  6. Morning Whirlway, That's a good link.....very easy to read and understand. Thanks. Take care, Everyone. Margaret
  7. Hi Kobi , Since Gareth was diagnosed last Nov. he has seen the rheumatologist, Cardiac doctor, gastric doctor, and Ear/nose/throat doctor, and Psychiatric doctor.....plus his regular doctor. Sooooooooooooo, you are getting the whole workover....which is good. Take care and keep us posted. Take care, Everyone. Margaret
  8. Hi Pamela and Sherrill , Thanks for the advice. Sherrill....I think I will hold off on the Nephr. for a while. You calmed my nerves quite a bit. I didn't realize the numbers would get so low before total failure and dialysis. He has a ways to go and I will wait and discuss it with his rheumatologist the end of July. Take care, Everyone. Margaret
  9. Hi Nan , WOW....still bleeding? No wonder you're anemic. I thought he lasered you recently. Keeping you in may thoughts and ........ Take care, Everyone. Margaret
  10. Oh, Barefut , What a day......but kids are so good about understanding situations. I am sure your son understands more than you think. Tell him Happy Birthday from your cyber friends. Take care, Everyone. Margaret
  11. Hi Kobi , My son, Gareth, just tuned 19 and was diagnosed last Nov. with Sclero. His esophagus has stopped pushing food down, but he has no skin problems. What sent you to the hospital for testing and how did they decide on scleroderma? Best wishes to you as you learn about this illness. There will be lots of internet friends for you to 'call on' whenever you have a problem, question, or are just having a bad day. Take care, Everyone. Margaret
  12. Hi Everyone....as usual, I have been learning so much from everyone. I thank all of you for being so open and upfront about all your 'issues' with this disease. Gareth's rheumatologist e-mailed me last night and told me of his blood work. The ACA is still negative but the sed rate is back up to 62 (it had been down to 48) and his Fibrinogen was 418 (normal is 150-350). He is sending me a script for Plaquenil but said it would take a couple of months to kick in and keep him on the Meloxicam another month. He's got a 'gastric emptying' study scheduled for next Friday to find out why his stomach is 'hard'......as he puts it. Reading about all the gastro issues and Barbs not even being allowed to eat has got to be hard on all of you. It would be VERY hard to explain to Gareth that he couldn't eat ANYTHING.....no way he'd give up his cheeseburger/fries, pizza, Bar-B-Q chips, hot chicken wings!!! Fortunately, those aren't daily eatings. He'd rather suffer than give up food. Take care, Everyone. Margaret
  13. Jefa , Normal for adults WBC's is 4.8-10.8 on Gareth's blood sheet. M
  14. Hi Jefa , I got back about 1/2 hr ago and came straight to the 'puter trying to find info on Gastric emptying.....times, what's normal, etc. Is there anything in the files here? I jotted 2 times down quickly from what I saw.....40% after one hour and 61% after 11/4 hr. Then they let us go home. Gareth had to eat oatmeal with milk. Instead of laying for 90 minutes, he had to sit up in a chair. He did really well.......considering he never tried oatmeal before!!! He kept pushing the bowl away and the tech kept saying 'no....you have to eat all of it.' He was in a lot of pain in the beginning with the full stomach. I hope the tech puts that in the report. Yesterday, his primary care physician called and told me he was positive for H Pyloria...........again. It was from a blood draw on May 17. I have no clue how an ulcer feels but we both agreed that it is probably the 'hard' feeling that Gareth is relating to. dear husband and I have never had an ulcer so we don't have a clue what he is going through. His gastro doctor is setting up an endoscopy/colonoscopy to check 'things' out. He had dropped to 140#....down from 158# last July. He is coordinating it with an ENT doctor who will look at the vocal cords and find out why Gareth can't get past a whisper on most days. Thank you for asking and keeping him in your thoughts. As I have said before, this site has been a blessing to me........I have learned so much and you all have helped me understand what Gareth is feeling. Have a good day, Everyone. Margaret
  15. Hi Timo , My son, Gareth, is 19 and just diagnosed with sclero last Nov. The doctors have been going back and forth between sine sclero and UCTD.....all the same to me, his Mom. I know he has had a rough year of school and his strenght is gone most days, but he will be *graduating* next Friday with his class. I put that in astericks because he has Down Syndrome and Autism which allows him 2 more years of schooling. He wants to go to a state university (PSU) that offers a program called Lifelinks....where special needs kids can 'go to college.' They can continue their academics and work on job skills while interacting with their normal peers. As sick as what he has been this year, he is still excited about going this fall. Best of luck in your schooling to be a primary school teacher.....the world can always use good teachers!!! Take care, Everyone. Margaret
  16. Hi Louise , So glad you are coming to the States for Holiday....too bad it's ONLY to NYC!!! Just kidding...there is sooooooooo much to see all over the States. Hope you enjoy your visit!!! Take care, Everyone. Margaret
  17. Kelly , I get horrible leg cramps at night....in the calf, ankle and foot. If I don't eat a banana during the late afternoon, I take an OTC Potassium pill (99mg) with my supper. MY primary care physician suggested the OTC supplement. If I do one of those two, then I won't be awaken with cramps. If I do both, I will also have cramps.....go figure!!! Take care, Everyone. Margaret
  18. Barefut , My heart goes out to you. Please.....if you get so low that you hit bottom and can't stop the crying, see a psychiatrist. I know....one more doctor to add to your list. But, Gareth's reg psych (for the autism) brought in another psych who deals with the psychological affects of autoimmune diseases. I have mentioned this before.....autoimmune diseases CAN mess up the chemistry of the brain and depression is the result. Stress, alone, which is constant in your life, is the worst culprit. You people are going through so much.....don't be ashamed to ask for help from a psych. Take care, Everyone, and Happy Memorial Day to those in the States. Margaret
  19. Hi Sharon , I do not have sclero....my son has UCTD. I do have a severe curvature (S), though, and I am in pain almost daily. On the worst days, I feel like I have a knife between my shoulder blades and my left hip acts up to the point where I get out of the car and walk like a 'gimpy ole lady'. I am in my early 50's. There is a doctor in Baltimore that is doing reconstructive surgery on ladies like me. I see him this week, in fact. Take care, Margaret
  20. Hi Kobi , I also have a son with UCTD.....19 years old. They diagnosed him last Nov. How old is your son and why is he being hospitalized? This forum is great for information and encouragemnt. Take care, Everyone. Margaret
  21. <<The reason for all this was as she said, my trachea (voicebox) had become "pulled up and tethered" as a result of the scleroderma!>> Hi, Everyone....WOW...I wonder if this is why Gareth doesn't have more than a whisper on most days?!?!? I will keep this in mind when I talk to his rheumatologist the next time. Take care, Everyone. Margaret
  22. Hi Betty , This was Gareth last fall....always grabbing at this throat and saying 'hurt.' The doctor got him a swallowing test done to see if something was wrong with his neck and it showed his esophagus had stopped working. His food was sitting in the esophagus....thus the feeling in the throat area. I'd ask your doctor for a swallowing/esophageal test. Gareth will have to have another study done to see if his stomach is empyting correctly becuase for the past week he has been telling me his stomach 'is hard.' He's not much for communicating so I am not too sure what we will find. I feel like I am 'crying wolf' all the time now trying to figure this kid out. Take care, Everyone. Margaret
  23. Hi Heidi , I sure do hope everything turns out OK with your 'life complications.' Please keep posting, though, as I have learned so much from you. Take care, Everyone. Margaret
  24. <<I have also found that some Dr.s have a tendancy to use specific labratories because these are such sensitive tests....numbers can vary from lab to lab depending on how carefully they were run. >> Hi, Everyone , We are running into this problem with autoantibody testing with Gareth. The Ca. labs (twice) said his Anti-RNA Polymerase 1/111 tests were positive but Dr M's lab said they were negative. His ACA was negative before, yet Dr M's lab said it was 'equivocal' and, then, positve when done the second time. Who do you believe?!?!? If a specific autoantibody is negative one time, can it change to positive the next time and visa versa? Dr M's lab is continuing to run 'immunoprecipitation' testing.....or unusual sclero tests. The common antibodies for sclero are neg. at his lab, but positive from Ca. & our local lab. Auto-antibody Patterns from the Sclero Forum are from 1998....are they all still being used today? Gareth's ANA is positive, speckled pattern and his rheumatologist said that didn't mean anything. Just curious. Take care, Everyone. Margaret PS......Mike...thanks for taking the time to put 'things into English' . So many of your posts make many medical tests/procedures more understanding.
  25. Hi Everyone..... Just have a curious question....again!!! Gareth has been complaining these past few days, after he eats his meal, that 'his stomach is hard.' It's doesn't seem to hurt him but he comments on it. I felt his abdomen/intestines and it appears fine. Any advice.....perhaps his stomach isn't emptying correctly? I will call the gastro doctor tomorrow. What studies do they do to find out if the stomach isn't emptying food.....another swallowing test or barium test? Thanks. Take care, Everyone. Margaret