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Simon - if you are out there listening - I need to thank you

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Simon - if you are out there listening - I need to thank you

Post by Tigerlily on Sat Jun 14, 2014 7:26 pm

Hi Simon - if you are out there still watching the forum you established then I really need to send you my sincere thanks.
I've just had an US and a 4.00 x 4.30 HPT adenoma lit up like a Christmas tree - something we all yearn for but which often never happens.

You were sure I had a pHPT adenoma. You were able to read my blood test results when other so-called medical experts were unable to even entertain the idea, through their own ignorance of this disease.

You have done so much yourself to educate yourself and other patients about this disorder (and "patient" is no way what we are) that you should be inordinately proud of yourself for what you have achieved - for yourself and for probably hundreds of us. There are many more HPT sufferers" lurking " around this forum and the old one, like I myself was for some time, just gathering information and the strength to try and ask someone in the medical profession if HPT could be a possibility.

It is thanks to your efforts that a lot of us have been directed to ask the right questions and keep on asking them, and all the other "awkward" ones that go along with this disease, in order to try and get some answers. Finally, after 15 months of asking the questions YOU prompted me to ask, I have a clear diagnosis (from a Rheumatologist whom I have not even met, but who was clued up enough to be able to diagnose normocalcaemic HPT from

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Re: Simon - if you are out there listening - I need to thank you

Post by Amanda Lynne on Sat Jun 14, 2014 7:32 pm

Hear hear Tigerlily, you've said it all.
Amanda xxxx
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Re: Simon - if you are out there listening - I need to thank you

Post by Tigerlily on Sat Jun 14, 2014 7:38 pm

Oops - pressed wrong button and cut myself off here:

Continued:

diagnose HPT from my blood test results only.

If it wasn't for your knowledge, experience and generosity of spirit, Simon, I would still be sitting by the proverbial wayside on this HPT journey getting sicker and sicker and wondering why.

I hope you are in improved health, Simon, wherever you are on your journey.
We would be hugely pleased to have a word from you, but will fully understand if that is not your wish.

Best of love and thanks from Tigerlily xxxx

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Re: Simon - if you are out there listening - I need to thank you

Post by Tigerlily on Sat Jun 14, 2014 7:39 pm

Thanks for your vote of support, Amanda - we do owe him a lot, don't we?

Love from Tigerlily xxx

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Re: Simon - if you are out there listening - I need to thank you

Post by Amanda Lynne on Sat Jun 14, 2014 8:26 pm

Yes we do he helped me immensely when I first discovered PTH disease, I couldn't have worked it all out without his help and I do still miss being able to ask him things even though we all help each other, I think of him as being a pioneer in setting up that forum and giving me the courage to question doctors and not to take no for an answer if I knew I was right.
I joined that forum almost from the start and got such support from Simon that I think he gave to everyone that joined.
I do send him love and best wishes for good health and happiness and if he's out there reading this a massive thank you.
Amanda xxxx
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Re: Simon - if you are out there listening - I need to thank you

Post by Little Audrey on Mon Jun 16, 2014 1:10 pm

I feel exactly the same, Tigerlily! I can remember Simon's first reply to my very first post, when he told me of his own lab results. He said our cases and our labwork sounded almost identical. He was pretty certain I had at least 1 tumor in my neck. Turned out he was right on the money! I had 2! His words gave me the courage I needed to continue my fight toward a diagnosis and a cure! I think of him every day and pray he is doing well. I am so VERY grateful that I found him and his forum a little over a year ago!

We all love you, Simon!!!

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Re: Simon - if you are out there listening - I need to thank you

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