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Everything posted by oddone

  1. oddone

    Update - Great News

    Dave - I am soooo happy foy you and your family!! All those dark days seem to have paid off. Congrats! Your strength and those who have supported you is shining through! Have a wonderful day!
  2. oddone

    Our Little Peanut

    Take your time, rest and get your strength back. We are all thinking about you!
  3. oddone

    Truman (Linda) in the hospital

    Thinking about you, I hope you are well soon.
  4. oddone

    Anybody in the Gleevec study

    Gidget - My husband was screened yesterday for the Gleevec study here in London. I specifically asked about the usage of acetaminophen/paracetamol, as he seems to use it at lease once a day. They said that they were not aware of ant restrictions concerning acetaminophen/paracetamol. I was wondering if you found any literature about this. Thank you - Sorry to hear of your strep, hope t is sorted out quickly!! :)
  5. oddone

    Anybody in the Gleevec study

    My husband has decided to go ahead with the Gleevec Study. He has the same DR. as "Lucy" here in the forum. His screening is scheduled for April 28. Hope all continues to go well Gidget, look forward to some updates. Are PTF's and ECG's performed at the screening along with the bloodwork, urine and skin scores?
  6. oddone

    Pariet, anyone?

    My dear husband is on Pariet for reflux, and it works very well for him. No side effects to report, seems like a mild way to eliminate a symptom, good luck!!! :)
  7. Dave: Im so glad to see that you have taken a post here on the forum, your helpfulness, insight and support is heartwarming. The truth of your journey, through your trials and tribulations is an inspiration. Good luck, I look forward to many discussions and chats!
  8. My husband is right handed, and is affected more in the right hand
  9. oddone

    Gleevec (Not useful for scleroderma)

    Hello My husband may be participating in a clinical trial for Gleevec. We should be receiving information concerning the trial in 3-4 weeks. Are there any sclero's on this forum currently on this study? The big hesitation for my husband are side effects. Anyone?
  10. My dear husband suffers from anxiety and takes clonazepam when required. He has recently been complaining of being SOB, minimal exertion. Also, has problems taking deep breaths. How do you know if this is a new problem? We take his blood pressure once a week, and dr. has said 135/85 consistently would be high. Several readings 142/87 or there abouts, but after deep breathing exercises or laying down, it gets better. My question is how do you know if its increased anxiety, Blood pressure problems beginning or lung involvement (SOB)???? Very confusing Thanks for any replies! Oddone
  11. oddone

    Is This Tacky? Honestly...

    Sorry forgot to add... If your guests want to find out more about Scleroderma, i beleive this website address is on the bracelet. This way, it doesn't have to be directly discussed on your special day, but it will give you a feeling of charity and accomplishment...... making your day even more special....................and rightfully so. Gook luck!
  12. oddone

    Is This Tacky? Honestly...

    What about having the little "gifts" or "trinkets that people usually have sitting at each plate of the reception I beleive they are called bombadiers? An idea..... My wonderful friend, kind of adopted brother, had cards made up saying "in lieu of bombadiers(SP?), we have made a donation to the Cancer Society in loving memory of ........". It was very touching, and I thought, extremely generous. Perhaps something similar to the following: "In lieu of a bombadier, we have made a charitable donation to the International Scleroderma Network, to strive to continue with research, awaerness and education on this rare disease." Have a pretty cardstock with a scleroderma ribbon printed on it, set like a placecard in front of each plate, perhaps with a Scleroderma Awareness Bracelet attached. If it is something close to your heart, and done so charitably, I don't think anyone would find it tacky.
  13. oddone

    Scleroderma Webcast Tue, Oct 30th, 12:00 Ct

    This was a great interview, hope everyone continues to get the word out about Scleroderma. The more people that have knowledge of Scleroderma, the more likely there will be funding and research dedicated to finding a cure.
  14. oddone

    Sct Update

    Dave: Great to hear from you, and that everything is looking UP!!!!!! Think of you often, hope that it continues in the right direction, Thats awesome!!!!!
  15. oddone

    Skin Involvement

    My understanding is that if the thickening occurs above the elbows, and down to chest etc. etc. it puts you in the "diffuse" category.
  16. oddone


    I have had a routine colonoscopy (when I was 35). The worst part was the preparation (drinking stuff that cleans you right out for the procedure) and fasting. The actual colonoscopy wasn't a big deal, as you are given a sedative. While I do not have scleroderma, I believe that this test is DEFINATELY a great tool especially if polyps are in question, or bleeding. I did not have any polyps , but my brother (39) did, and they were taken during the colonoscopy, so no additional appt necessary. The same thing with bleeding, they can cautaurize (sp) the tissue to stop the bleeding at the same time. This test, while many are scared/turned off by it is becoming a very important tool. It definately finds things before there is a problem (ie cancer) and I think that any doctor that recommends one is definately looking out for your best interests, even if they are just doing precautionary measures.
  17. oddone

    Seen Consultant

    What did they call it when they were referring to your "right side stiffening"? Just reading test results, and need some interpretation.
  18. oddone


    Don't know about a "trigger". My husband was diagnosed Oct 06(age 38), had a very close male friend (best friends in public school) diagnosed when he was 18. Extremely WEIRD, as this seems to be a "womens' disease" with the stats being only 1 in every 7 patients with Scleroderma being male. I always tease him "What were you guys smoking behind the school, hoping you wouldn't get caught??" Haven't found any evidence of anything, but I'm wondering about "environmental" and combined with the luck (or bad luck as it seems) of their genetic pools.
  19. oddone

    Scot Study

    Hi there Birdman & Wife: Hope all is going well! How has your journey been this far? I think of you often.
  20. oddone

    Dave Is Really Sick

    Dave: Keep on truckin! Thinking about you, and all you've been through. Your family too. Stay strong. And as always.....Looking way up!
  21. Just wondering if anyone has any research information on elevated skin temperatures? DH with raynauds (cold hands and feet) but torso hot to the touch. No fever present. Anyone have this happen to them? Thanks
  22. oddone

    Elevated Skin Temperature

    Thanks for the replies, in the back of my mind, I was thinking that the heat does indicate the disease or inflammation activity. Its hard to know with no other symptoms, and as such, whether to be worried about it. Whether it would be a reason to contact the rheumatologist or not.
  23. I agree with Shelley, you should always use the EXACT name of the diagnosis given to you when explaining your illness. As you can see Scleroderma covers a wide variety of "types", and with it being so rare in the medical community, its the only PROPER way to get the info out there. You can always shorten it up later when you are sure that your doctors. are on the same page as you. With so many postings as to how the medical professionals treat their patients negatively (for knowing too much re: "internet surfing" etc,), if we can give them back the exact information we have received, we may be given a little more creditability.
  24. oddone

    It's Hard To Be Patient

    Paul: I agree its hard to be patient. The vastness of this disease and the individuality of it also makes it tough. My husband was diagnosed in Oct/06, and I am like you, taking in all the information I can. It gets exhausting sometimes and sometimes you just have to walk away from it for a little while, cause unlike some illnesses, there are no concrete answers. This forum is a great source of knowledge and insight. It helps me (the one without the disease) to learn how others with the disease are coping, and gives me a better sense in "how to help" the one I love. Even some of the "venting" is interesting and helpful. so, welcome to the forum, and never be afraid to ask your questions, there are sooooo many people here with helpful hints, and tips.
  25. oddone

    Typical Age Of Dx?

    Husband diagnosis at age 38, thought 1 year prior that he was starting to get carpal tunnel. Felt very arthritic in hands and knees. His diagnosis is Scleroderma Diffuse Systemic Sclerosis. The main problem at the moment is skin involvement (systemically) - 29.5/51 on the Rodnan Skin Score.