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Topic: 1 week since the races ? (Read 159 times) |
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Yorky
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learn to meditate (or just sit & do nowt)
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1 week since the races ?
« on: Aug 17th, 2006, 3:04pm » |
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well as i posted last week(moaning about gettin hit with a seven while out jollying at the races)
i thought i would update you all.
the poking feeling as been replaced with a baby like shadow(no problem with that,just comes and goe's all day but does not start scaling 1/10.....but occasionally will hit 3 for about 5 min's about 3 times this week)
finally recieved 2days ago,melatonin(5mg capsule's,1 a day,fist week,2 2nd until 15mg a day,also frovatriptan 2.5mg 2 a day,securon 2 a day,plus some oxy.enough about me.
but have bean reading the board everyday and , last nite there was a post about bob wold(lsd)
well i sat and thought...and thought,and me and our lass been abit of festival type party people(gosh i wish i could have been at woodstock but im only 3 ,over the past nine years,although we just stay in now 
so we stpped using these recreational drgs.
but in those days ch was not as violent as he is now.
so i printed the bob wold story,and off i marched to the doctors  . showed him the story,then demanded he wrote to harvard offering me as a guinee pig  .
after he had stopped laughing,he told me i had been referred to a professor gatesby(roy21302,is this that guy who you see?ps i have lost your phone number)
i think he said something about surgery to my optrik? nerve.but apparently he said this was the best person in the uk,for ch.?dont know how long it will take to gain an appointment with him though,think i might just write to havard myself
ps roy did not get nowt at the races £70 down(£10 a race,but im not a gambler,our lass had 3 winner's,2 seconds and one 3rd not bad out of 7.
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| « Last Edit: Aug 17th, 2006, 3:08pm by Yorky » |
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
 
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Re: 1 week since the races ?
« Reply #1 on: Aug 17th, 2006, 7:40pm » |
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Hi Yorky,
I've got your email and replied, I'll be about first thing in the morning and then not until after 6pm tomorrow so bear that in mind when you answer okay?!
It's Professor Goadsby you've been referred to.
Check your doctor did actually put CH on the referral letter. This is important.. HUGELY important in fact as the general waiting list is much, much longer than the CH list.
When you have your appt let me know, I'll come and meet you and Mrs Yorky for a coffee and I'll even arrange a meet and greet with some other southerners for you!
You will have to write to Harvard yourself but I can discuss that and everything else you mentioned more when you give me a time to call okay?
Talk to you soon!
Helen
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Paul98
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Re: 1 week since the races ?
« Reply #2 on: Aug 17th, 2006, 8:04pm » |
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Goadsby is one of the top CH Dr's around! He was the Dr. that Simon Bower (sp?) saw. Simon runs the UK CH site.
Be very cautious about sergery Yorks. Consider it a last ditch effort when ALL else fails. It can't be reversed.
-P.
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LeLimey
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Re: 1 week since the races ?
« Reply #3 on: Aug 17th, 2006, 8:11pm » |
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Paul, Simon used to run that site, it grew into OUCH UK though
My son see's PG too and he is fantastic with him. Jasper thinks he is wonderful and calls him his special doctor. I think he's pretty wonderful too
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| « Last Edit: Aug 17th, 2006, 8:13pm by LeLimey » |
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Paul98
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Re: 1 week since the races ?
« Reply #4 on: Aug 17th, 2006, 8:23pm » |
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Glad Jasper gets to see PG. That's terrific LL. (or is that Doc. Limey ) Drummer said that he seemed like a REAL nice guy when he spoke with him. Glad you guys are in good hands.
Yorks, you or your Doc. must have some pull in order to see PG. Glad for you my friend.
-P.
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LeLimey
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OUCH-US - Less "ME" and more "WE"
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Re: 1 week since the races ?
« Reply #5 on: Aug 17th, 2006, 8:28pm » |
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Paul since I LIKE you I'm going to let you call me she-who-must-be-obeyed how about that?!
Call me what you like really.. I don't mind!
PG IS really nice, he listens to everything you say and sometimes seems distant but it's because he is constantly thinking and working stuff out. He cares so passionately about people with CH and he is relentless in his efforts to help them. He is a true CH hero in my book.
Helen
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Paul98
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Re: 1 week since the races ?
« Reply #6 on: Aug 17th, 2006, 8:44pm » |
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on Aug 17th, 2006, 8:28pm, LeLimey wrote:Paul since I LIKE you I'm going to let you call me she-who-must-be-obeyed how about that?!
Call me what you like really.. I don't mind!
PG IS really nice, he listens to everything you say and sometimes seems distant but it's because he is constantly thinking and working stuff out. He cares so passionately about people with CH and he is relentless in his efforts to help them. He is a true CH hero in my book.
Helen |
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Yes your Dominatrix!
I read one of his books on CH that he co-authored a few years ago. Quite interesting and I learned a great deal.
I think the best attribute a Dr. can have is that he listens. Next best is to admit when he does not know the answer but can point you to someone who does.
Helen...Oops, I mean She-who-must-be-obeyed  , do you ever sleep? Must be 1 am for you.
-P.
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| « Last Edit: Aug 17th, 2006, 8:45pm by Paul-0.1 » |
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Yorky
CH.com Alumnus
New Board Hall of Famer
learn to meditate (or just sit & do nowt)
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Posts: 1280
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Re: 1 week since the races ?
« Reply #7 on: Aug 18th, 2006, 1:43am » |
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on Aug 17th, 2006, 8:23pm, Paul98 wrote:Glad Jasper gets to see PG. That's terrific LL. (or is that Doc. Limey ) Drummer said that he seemed like a REAL nice guy when he spoke with him. Glad you guys are in good hands.
Yorks, you or your Doc. must have some pull in order to see PG. Glad for you my friend.
-P. |
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when i say iv been referred....he as wrote a letter,to see if he can refer me direct/or whether it has to be my neuro(who i see on the 8 of sep,a doctor boothman,not seen him for about 2 years/but blame this guy for all my miss diagnosis over the past 5 years,even my doc said he is clueless/but at least this time iv got a proper diagnosis, and not.....sinking face syndrome...etc
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today is a gift.....thats why it is called the
present.
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LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
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Re: 1 week since the races ?
« Reply #8 on: Aug 18th, 2006, 5:11am » |
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on Aug 17th, 2006, 8:44pm, Paul98 wrote:
Helen...Oops, I mean She-who-must-be-obeyed , do you ever sleep? Must be 1 am for you.
-P.
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It's a funny thing Paul, since coming back from Milwaukee I just can't get back into "our" time here. My body still likes your time zones better! I haven't gone to bed before 2am since I've been back
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