HopeAboveAll

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About HopeAboveAll

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  1. Hi I am 33 and am on the verge of a diagnosis. Raynaud's and hypomotility in oesophogus. I am petrified and depressed. I am really, really trying but just really struggling. Are there any men out there who have lived a while with this? I can only find horror stories. Any hope is truly appreciated. J
  2. Thanks Judy. Yes I also am of that understanding re Raynaud's now. The man who was doing the thermography obviously knew his stuff. He was part of the scleroderma unit. He stated my fingers rewarmed indicative of Primary Raynaud's not secondary. I don't know more than that, and he stated they went hotter than my hand within 13 minutes so again indicates primary not secondary? It's all very daunting. All I know is my esophagus recently stopped behaving and it's horrible in it's own right. I can only see how it goes now. Just a small point to clarify. The specialist said my manometry was bad but did not mean sclero simply on its own..... hence the tests. . It was my rewarming curve that indicates primary. This is still to be evaluated by blood tests etc. I think I have it to be honest. That's 2 of the 5 crest symptoms, osophogeal motility and Raynaud's.... I am sooo nervous and doing my best not to be :( J
  3. Hi all. Thanks for the replies. The specialist told me she disagreed and there were no current indicators for sclero. She said my manometry was bad but did not mean sclero. But she wanted to run tests. Skin score was 0. She then ordered a thermography test, a doppler. Bloods and nail bed capillaroscopy. I have to wait 4 weeks for the result. The thermography identified primary not secondary Raynaud's, whatever that means and my doppler test was fine. Just waiting on bloods and nail bed test. I have been in bits. I know I should be coping better and I am doing my best. My oesophageal symptoms just constantly remind me of the situation though so it's hard to forget about, as a result. I take some hope from each of you...Thank you again for your replies :) Joelf and Amanda. THANKS SO MUCH for the detailed links, they are very informative.
  4. Hi, I am 33, and my oesophagus has weak motility (proven by manometry) and I have severe severe Reflux. I also have scarring in my penis. I have no confirmed diagnosis yet. I am so depressed. I can't see any hope for men with this disease. As a grown man I have never cried so hard or for so long. I am off to see a sclero specialist today. I am petrified by what my future holds or does not more to the point. I am absolutely terrified and depressed. I am trying each day to come to terms with the probability of what's wrong with me,. Are there any hope stories? I just want to get married to my amazing lady and try for a baby. My ultimate wish is to grow old with my girlfriend. But that looks like all but impossible now! Please any men in particular with success stories... ladies too, but I want to try and see if men can survive anything like ladies can with this?