PNH website

[wjjw]

I wanted to point out that stevepaul's website has some excellent information on peripheral nerve hyperexcitability (PNH), BFS, BCFS, neuromyotonia, etc. For those who have not seen it, the link is:

http://www.pnhinfo.com/

I'm reposting so that it can be made "sticky" and the link readily available (Thanks JohnV).

[klag]

thanks wjjw for the info

[Guest]

I agree with you completely.
_______________
Surf the Net anonymously, bypass school/work Web filters!

[d75]

Does anyone know how I can surf the web anonymously, and more specifically bypass school filters?

Strictly speaking this isn't a problem, since I haven't been at school for many years, but I'd still like the kudos of being able to declare myself a "school filter bypasser".

[PJR]

wjjw

Great info! I talked about PNH in my first post and you used it in a quote, thanks. It made me feel half educated for my first post. I like the fact that the info is about bfs etc and doesn’t relate the symptoms to totally disabling diseases(like some things I have read in the past from different sources that scared the hell out of me) and talks about it as its own disorder. It explains bfs, nmt, bcfs like it is. No Bs. Great info for all new twitchers. It talks about sensory symptoms tingling, pins and needles, etc. Tingling was my first symptom, major tingling like I was hooked up to a battery pack. I felt weird sensations in my feet which I later realized was twitching, wow! Then all hell broke loose when I did that search on the web. I’m cool now just looking to talk and help others along the road with this goofy syndrome. Its great you’re guiding people to read this info, it will help them out allot! Let’s keep talking and good luck to all the twitchers and I must say, the tinglers too.

Take care,

Paul
PJR

[mikey35]

PNHE is exactly how I feel -- it is so crazy to have these pains in my calves and quads -- along with tingling, twitches, spasms, and the ever-so- F***ed fealing of worms crawling under your skin.

[stevepaul]

Apologies to those who have looked for the site and have found it no longer available. The company who hosted it withdrew this service. I have been redesigning the site but have still to finish it off. It will be up and running once again in the not too distant future and hopefully it will be more informative than the last version. That said, my neurologist (Dr Hart) who answered many questions for me died suddenly and unexpectedly in November last year. He had treated me since 2000 and was a great Dr. I count myself lucky to have known him and seen him on many occasions.

His all too early death will be a significant loss to further research into the little understood PNH syndromes.

Regards.
Steve.

[garym]

Steve,

Thanks for the update...It is good to hear from you, as I was getting a little worried about you. Sorry to hear about Dr. Hart.

Take care,
Gary

[stevepaul]

For anyone who may be interested I've put the old site back on-line until I get my act together and finish the new one. I've updated the news section and fixed broken links.

Please note the change of address. http://www.pnhinfo.com

Hi Gary. I'm fine thanks. No better, no worse.....no problem.

Regards.
Steve.

[LaurentCH]

good website, thanks! i have other autoimmune issues like vitiligo. i wonder, if bfs is an autoimmune problem why are the most affected people medstaff? autoimmunity would not favorise a certain profession wouldn't it?

[Silverbullet]

This is an excellent site

Martin

[Spider]

Excellent stuff .

That really sounds what I have , quite incredible stuff.