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Small fiber neuropathy?

Unread postPosted: Sun Mar 18, 2018 8:46 am
by Janie
Dr. David Healy's comment today on the newest Rxisk article "Venus not rising":

"Suzanne
Good question. There have been several pledges that are slow materializing, and one or two that have dematerialized. We’ve also had some strong media links – in the Venus o’Hara territory – who I would have thought could have done a great deal to help spread the word. I haven’t given up on these but its the old story everyone wants good news not grim news.

I’m happy that we will get to $50K.

The plan always was to hold out for a cure and award the fund to whoever comes up with one. I feel pretty confident that the answer lies in a short fibre neuropathy – something that several of those linking up with us have pointed to. In the next few weeks we plan to tell everyone more about SFN and how to get tested for it. If it turns out the tests are very expensive, one option might be to use part of the fund to help people get tested.

If we have a test that establishes what the problem is, perhaps that will incentivise people to find a cure. It will certainly help direct efforts which at the moment stretch from chasing brain leads to liver leads and exploring the role of Vitamin K and other factors.

This all takes time. The biggest leads have come from regular contributors to the blogs who despite no background in these areas have done some ingenious researching and come up with great leads.

If the leads still don’t lead to a cure, what happens then? We are slightly stuck in that there have been some very large anonymous donations. It’s not possible to give everything back although we could give a lot back. The alternative is to find some use that will benefit sufferers from PSSD, PGAD, PFS and PRSD. We are open to any ideas people may have. Not a cent of any donation has been spent on overheads or anything and there are no plans to spend a cent on anything other than something beneficial for sufferers.

Any and all ideas welcome

David"

Anyone tested it already? How can it be tested in genital area?

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Unread postPosted: Sun Mar 18, 2018 9:01 am
by iii1i1i1
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Re: Small fiber neuropathy?

Unread postPosted: Wed Jun 13, 2018 12:01 pm
by lukepssd6years
I had all.my nerves tested 2 days ago at the hospital in the urology department and they are all fine. They understand pssd and the lead neurologist suggested i have the nerves test done. If you want more information then pm me.
on the basis of the test results it doesnt look like small fibre neuropathy plays a part in pssd

Re: Small fiber neuropathy?

Unread postPosted: Wed Jun 13, 2018 12:16 pm
by anacleta
Luke, can you better specify what tests you did and how they were done?

Re: Small fiber neuropathy?

Unread postPosted: Wed Jun 13, 2018 8:27 pm
by Ghost
Further evidence against Healy's theory.

Re: Small fiber neuropathy?

Unread postPosted: Wed Jun 13, 2018 8:27 pm
by Ghost
Further evidence against Healy's theory.

I'm worried about giving money to his PSSD project if it's spent on these nerves. I think money is better spent on some of the other researchers or in the gene project.

Re: Small fiber neuropathy?

Unread postPosted: Thu Jun 14, 2018 9:03 am
by TalkingAntColony
I guess if people have already given money for that, it would be nice to rule out neuropathy.