Re: agrees to drug trials in UK

[Guest guest]

Jill,

I'm glad has agreed to participate in this trial. Coincidentally, my

next door neighbor went to medical school with one of the physicians that is

working on this and he put me in touch with Dr. Niall Quinn, who is the

chief investigator for this study. Rob is actually considering

participation in the study as well, but given the distance it will be quite

difficult. We plan to discuss it with his doctor here in the States before

we decide.

Dr. Quinn is one of the foremost MSA experts in the world and I'm sure he

would not be undertaking this trial if he didn't think there was some hope.

Please tell that we think he is very brave for deciding to do this, as

although there is hope, there is also risk and some of the side effects may

be unpleasant.

I'll let you know what we decide to do, but meanwhile, good luck and please

do keep us posted.

Carol & Rob

Lexington, MA

agrees to drug trials in UK

>

> Some of you are aware through the Sunday chats that has been asked to

> take part in tests for synthetic growth hormone drug trials, after initial

> talks with the doctors he has decided to go ahead.

>

> The trials will last for one year, and five patients will get the drug and

> five will get a placebo, naturally we will not know which one will

> get.

>

> I will have to inject him every other day and he will have to have a

lumber

> punch every 3 months,

>

> There are, as you would expect, no promises, but initially we were told

> that the tests would end after one year regardless

> of the results. We argued that if the drug could halt the decline as they

> hope, we should be allowed to continue and they have now agreed that we

can

> - of course we know it is only a 50/50 chance he will get the 'real thing'

>

> I have my reservations about this as some of the expected side effects are

> quite nasty but at the end of the day it is 's decision and he is

> willing to grasp any straw.

>

> I do have paperwork describing what it is all about and I am trying to

> download it to put on the site, but I keep scanning it and it appears in

> such an enormous size that I am having troubles. I will keep trying but

if

> anyone wants a copy by snail mail

> please let me know.

>

> Keep your fingers crossed for us, we go for our first appointment on 22nd

> July, for heart tests and autonomic tests etc.

>

> JILL

>

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[Guest guest]

am very interested. please keep informed and i would like all info