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.
Scared.. Men especially
Posted 27 August 2013 - 07:30 AM
Posted 27 August 2013 - 02:23 PM
Hi J, afraid I am a female but just wanted to offer a little reassurance. All is not bad with this disease I have limited sclero with some hypomotility in oesophagus and am taking domperidone which definitely helps personally I always look on the bright side and can honestly say this disease, including lung disease, has never got me down. May have to take lots of tablets and make a few lifestyle adjustments but still have a very full and happy life. I know it may sound easy for me to say but try not to worry too much. Each case is different and try not to assume you have or will have the worse case scenario.
What I would say though, like Jo has mentioned, you need to be very pro-active read up on everything to become knowledgeable about the disease and then follow up requesting appointments with the right consultants, don't forget you can request second opinions and can request specific hospitals. I did this and I see three different local consultants and then am also under the Brompton and Royal Free. I think you need to know what you want and then go for it. Locally my consultants didn't seem to have any real awareness of connecting all the symptoms and interest in treating them, apart from the gastroenterologist who is brilliant locally and sent me to Guys for ph and mamometric tests. Basically I have pursued the care that I need and expect.
I hope this helps...try to keep positive....from my point of view things could be lots worse.
Posted 27 August 2013 - 02:53 PM
Welcome to the forums and a positive attitude works wonders! No point worrying it does not bring about change only despair! Glad your symptoms are under control. Does the English weather affect your lungs?
I think that you're based in my area and I host a local group for the Scleroderma Society and we meet next on the last Saturday in September. It's open to anyone with scleroderma and they can bring guests and my husband runs the group for caregivers at the same time so husbands/partners are also included. PM me if you are interested in coming or want more information.
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Posted 29 August 2013 - 01:35 PM
Hi Amanda, yes, I can't be worrying about what might happen...too much to focus on now, in a good way. :) Thanks for the offer of meeting, I will bear in mind.