Hi Peeps!
Went to see a new Doc this morning at our local practice....
I said I wanted to discuss my BP,CH and Stress in that order...
Very sympathetic and put me on a new tab to work alongside the Ramipril I am on already..

CH (this is the good news) she is aware of CH, so I gave her the heads up by telling her just
how the story goes,what CH means to us and saying Veramapril and O2 etc...is the
recommended way to go, talked about mushrooms, LSD, and latest news from
Entheogen's research....
I said I wanted to see her from now on and we could learn together!

She knows a Doc who is shit hot on CH (10 miles away!) and would not hesitate to
refer me to her or a NEURO!

I felt confident in there today and its ALL down to you Guys on here...

I have no words to etc,etc...

RESPECT

Gary

The war's outlook sure can take a turn when you start winning a few battles, no?

I don't know of many things that feel better then that firt doc that "gets it." That's fantastic news Gary!

Joe

Thanks for that Brew and Joe!

Maybe it was just Fate eh?

Respect

Gary

Batty, that's fantastic news!! And I can't wait to hear back from you how that meeting goes!
P.S. Are you a sci-fi fan? I'm thinking you must be to know Blade Runner so well!

Hey Batty, that's good news! I know exactly how you feel, since, after a house move, I've lucked in with a GP who knows CH and is sympathetic.

He was away recently, and one of his colleagues refused to sign a repeat prescription for Imigran because I'd had some recently. When he got back and I told him, he created hell and has now put some kind of note on my notes that pops up big and yellow and states NOT to refuse.

Result.

Fingers crossed that things stay good for you.

Cheers, CB

I am Deeply Humbled by your responses Guys..........

Our Pain aside, for one minute....
The Lives,Loves, Relationships ruined by misunderstanding of this curse is UNACCEPTABLE!
We are only a small % of the population, but the suffering is World Wide....
It was like winning the Lottery today, to find someone who understands!
It shouldn't be down to luck..It's down to Education, that's why We are here together.
Partners in Pain...
I KNOW WE are making a change and I am HONOURED to be here with you.

Deep Respect

Gary

Just out of interest, are you a member of OUCH(UK)?  If not, why not?

They're doing all they can to educate the great unwashed (and I include the medical profession in this category) about CH.

Cheers, CB

Nope CB, they want money to join....
They're not as warm as you folks on here and,
I think information should be free!

Respect

Gary

Glad things seem to be on the up....hang in there and don't be beaten
:)

Failure is NOT an option 37-41

Domo, arigato Tenshi  天使

Gary

Hi Gary

Can I just tell you that all the information on CH is free of charge on the OUCH (UK) website.  There is indeed a small charge for membership of  OUCH (UK), but it is not solely a web-based organisation; we operate a telephone helpline and we send out information and a magazine a couple of times a year, hold regional and national meetings and get togethers,  BUT the information on the website is free to all to read and download. OUCH (uk) feel that CH is such a devastating condition that to make a charge for information would be wrong.

To post on the forum of OUCH (uk), you have to be a member of OUCH .  You can read the forum for free, but if you want to post you have to be a member.  The reason we did that?  Well some there are some sad and sick people who get a kick out of trying to take down support forums like ours, and a few years back they almost succeeded, so to make it safe for our members- and lets face it a lot of us CHers are vulnerable people - we had to make the board password protected and limit registration to paid up members.  We could have made the whole board password protected, but as stated above, OUCH (UK) felt that it would be morally wrong to withhold information on CH

And I have to say that I think that £10 a year for the services we offer is pretty cheap - I know I pay a whole lot more than that a month for my phone and internet charges!

So, take a look, the information is free to all.

Val.  ;)

Thanks for the input Val and I stand corrected...

I was asked why I hadn't joined, and it was my personal opinion and not shared by,
or meant to represent the views of any other here on this board...

I appreciate that it is a welcome and welcoming site for us Brits too!

Having said that, these folks here have 'worn the CH T-shirt' for many,many years, and
their collective wealth of information is, to me, priceless!

In my error of mis-representing the validity of OUCH-UK on this board,
I will promise to join you as soon as I have the spare money, once my Divorce is done and dusted.

Apologies to and Respect for your cause Val...

Gary

dragonlady wrote on Mar 3^rd, 2011 at 1:40pm:

there are some sad and sick people who get a kick out of trying to take down support forums like ours

Hi Val, he wasn't from Iran by any chance?

Gary

Gary, thanks for your kind words.  PM me if you have any questions or queries on CH from the Brit point of view, like all the guys on here happy to share info in the fight against this "monster"  of a disease.  And others who are reading this thread, I'm not mad with any of you, you guys do a great job here - I just wanted to make clear the differences (other than the disease of course!) between ch.com and OUCH (UK) forums (or should that be fora?)  We all share a common purpose - but different strokes for different folks, eh?

The sicko from Iran?  There was more than one!  Who knows where from, some deep, dark sad place that i don't want to visit - got enough of my own to go to on a bad day!

PF times to all

Val.  ;)