4am musings...: It's another 4am cup of tea job. Woken... - NRAS

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4am musings...

Bon1 profile image
Bon1
7 Replies

It's another 4am cup of tea job. Woken by some guy shouting in the street after what was clearly the end of an unsuccessful night out and now hands are keeping me awake!

Just wondering if anyone out there has had a straight answer out of their consultant about when and if this me miracle vagus nerve stimulation thing is likely to be a real treatment for us huddled masses.

I mentioned it in passing at my last appointment and the esteemed consultant basically laughed and moved on. That didn't inspire much confidence!

Anyone heard anything a tad more encouraging???

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Bon1 profile image
Bon1
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Leonwp profile image
Leonwp

You mean the Vegus nerve ganglion blocking electro therapy? I was applied to go on the first trial by the university hospital in Holland that were doing the first trial20 months ag, and missed it by days, im in line to go on trial 2 and as some have dropped out i should get on it. I believe once those trials are done it will be about 2 years before it can be accreditted as a recognised procedure because of course its not subject to drugs trials but they have to prove it is as good as the drugs it replaces i guess.

Bon1 profile image
Bon1 in reply to Leonwp

Blimey thats quite encouraging!!!! You must be pretty excited? I mean from what little I have heard the results are pretty dramatic. How did you manage to get on that?

X

Leonwp profile image
Leonwp in reply to Bon1

I read about the trials and found out the email of the professor in charge by looking on the university hospitals website, i emailed him direct and told him all meds including two biotherapies had failed and begged him to let me on the trial, he said i was too late and in any case they are trialing with people who are responding to medicinal therapy and reducing them without deteriation. However he accepted that i had nothing to loose and promised to liase with my consultant as one of the first uncontrolled patients to try it when available. I know my consultant has been contacted and has said hes happy to have them access my records and do any other tests and as i am only on Hydroxychloroquin now due to rejecting all other meds he agrees i have little or nothing to loose.

Bon1 profile image
Bon1 in reply to Leonwp

Good luck. Hope you get started on it soon. Let us know how it goes for you.

X

Leonwp profile image
Leonwp in reply to Bon1

I promise if it happens you will know as soon as i do, i hold out real hopes for this avenue, it is the only thing that makes sense with this auto immune disease apart from gene therapy which although perhaps ideal is still a long way off.

Interesting - I had not even heard of this therapy. It looks like it is just for weight loss?

JacquiThomas999 profile image
JacquiThomas999 in reply to

The covered it on a Dr documentary a few months back. Said it would be about 5 years away. Apparently it stops the body attacking the joints. I can't remember the precise details.

But we live in hope.

Jacqui

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