New and and a family affair!
New and and a family affair!
Hi All
My name is Sarah and I used the FB group when I was suffering, and have just joined OUCH to pay back my gratitude for their help during my first episodic bout in the summer.
I have a twin sister who suffers too, and we had attacks and bouts on the exact same days and same time each day. Wierd! My brother suffers too. Thankfully we are all now out of bout.
Anyway my neuro passed us Prof Goadsby' details as we were are an unusual case with the freaky twin timing! So Prof Goadsby has asked to meet us and am just sorting out that as bit of a trek from North Yorkshire, with jobs and kids to sort, but willing to see him to help research the condition and he has been back in contact this week with me to progress it. Will keep you posted if we find anything interesting out!
Sarah
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Welcome Sarah, although sorry you need to be here.....
Best of luck with your meeting, the Prof is a really great guy, probably the most charismatic person you will ever meet.
All I can tell you is that every prediction he has made for me has come true, and he has helped me to understand everything that has happened in the past. In my case, it was only by fully understanding my cycle that I could best learn how to treat it.
I'm adopted, so I often wonder if I have relatives out there who are fellow sufferers.
Look forward to hearing how you get on
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Warning: This forum may contain nuts
Hi Sarah
And welcome to you and your twin. As soon as I saw that you were twins I knew the Prof would be interested to meet you. He is the best authority on CH in the world and of course he is our patron [how lucky are we!]. Hope the consultation goes well and please keep us posted.
Val.
Welcome Sarah! I'm very sorry your family is sharing this horrible condition although it is very interesting indeed. One for the Prof to get his teeth into for sure...hope you all have a very long remission period.
All the best,
Dorothy
Dorothy (Trustee)
Even more charismatic than me??
I'm special too!
:bigsmile:
Hi Sarah and welcome to the forum.
My mistake Phil, I had overlooked the possibility that you might bump into Sarah at an OUCH meeting
I don't think 'Special' begins to cover it Phil.............'Unique??'
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Warning: This forum may contain nuts