h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Neuropathy is sometimes referred to as the 'silent disease', because not many people (including doctors and patients) know about it. Currently in the US alone 2,000,000 people are estimated to suffer from it, including about ten per cent of diabetics. Heavy alcohol users are also prone to peripheral neuropathies, a condition sometimes called alco-neuropathy1, which can have an insidious onset and there are many alcoholics out there with usually peripheral sensory, but also motor neuropathies. Likewise diabetics are also prone to peripheral neuropathies.




What is it?

Neuropathic means that your neural-system is damaged, and the condition comes in one or all of three forms, depending on which type of nerves have been damaged:

Sensory Neuropathic Damage - This is when some parts of your body lose all sensation. For example the loss of feeling in the hands or feet. Some parts of the body become hypersensitive and you wake up in the night screaming as you receive random pain signals from every nerve in your body. Sensory neuropathy is by far the most common manifestation of alcoholic neurological dysfunction. This is manifested by poor peripheral sensation and occasionally neuropathic pain - which is more common in diabetics and people with multiple sclerosis than in alcoholic peripheral neuropathy.

Autonomic Neuropathic Damage - This is when you can't feel when you need to go to the loo and you can't feel if you've already let it go. Alcoholics do not tend to get autonomic neuropathies, certainly not as commonly as say diabetics. Loss of bladder function is one manifestation of autonomic neuropathies but this is usually not being able to pass urine rather than being incontinent. Others are a fall in blood pressure on standing and a fast heart rate. A condition alcoholics can get is Wernicke-Korsakoff disease due to vitamin B1 deficiency and heavy alcohol abuse which leads to ataxia (poor co-ordination and unsteady walking) and dementia.

Motoric Neuropathic Damage - You're practically paralysed and can't do anything at all. Your mouth has problems with speaking, people have difficulty understanding what you're saying and muscles think they receive signals from your brain and start to move uncontrollably. Motor neuropathies do not tend to involve the muscles of the face but often involve muscles of the extremities, with decreased power making walking difficult and also decrease in proprioception2. Uncontrollable muscle movement is not characteristic of alcoholic neuropathy and occurs with primary brain lesions.

Not all sufferers of neuropathy have all three types of nerve damage. If only one type is damaged, the condition is called mononeuropathy; polyneuropathy usually means more than two nerve groups affected rather than a combination of sensory, autonomic and motor.




How Do You Get It?

B vitamins are essential, B1, B12, B6 and folate especially. However, in most cases the lack of vitamin B1 is not caused by eating too little. Vitamin B1 is broken down very quickly by alcohol, and drinking two bottles of wine or about eight bottles of beer a day for a few years will do the trick. The onset of peripheral neuropathy is often insidious, although stopping drinking does usually help.

Other common causes are related to diabetes, auto-immune disorders, or genetic problems. Sometimes it can be brought on by extreme trauma or shock.




Cures

If you're lucky you can be cured, but it will take at least six months and loads of medicine, a lot of hospital visits where they will push and pull at the most painful parts of your body, and a lot training for your weakened muscles. If you're less lucky, then it will take you years to recover, if you recover at all. There is a very small chance that you will regain about 90% of your nervous system. There is a big chance you will get back less.


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1 Although this is not a term used in general medical parlance.
2 A term meaning being aware of the exact position of ones limbs.


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I DID NOT WRITE THE ABOVE ARTICLE!!!

I merely copied it from the Edited guide Entry. It has been, and continues to be, the subject of a good deal of criticism.

I shal keep trying to track down any conversations relating to this and post them here.

If people wish to comment, by all means go ahead, but because I am posting old convo's in between, it may be a good idea to date the actual posts as we make them now on this thread for future reference.

Terri.
26 June 2003.

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Subject: neuropathy
Posted Sep 11, 2002 by Researcher 202889 Post: 1


Hi, I have just been diagnosed as having peripheral neuropathy and I am in terrible pain in my feet. My doctor has mentioned sensory neuropathy and says there is no cure. As you said it is quite often alcholics that suffer with this the doctor cannot come up with an underlying cause as I am not a heavy drinker and never have been and also i haven't got diabetes or M.S. You mentioned that there is a cure and that it can take several months can anyone enlighten me on this as both my doctor and consultant have just said I have to live with this awful illness.


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Subject: neuropathy
Posted Nov 6, 2002 by Terri & Yoda, cheese box creators extraordinaire (ferrets & mandolins a speciality.)
This is a reply to this Posting.
Post: 2


Hello, you are not alone! I've got "it" too; in my case it probably was due to heavy drinking -- I gave up completely 8 months back & in most ways feel much better, but still not right.
A very helpful website exists called the Guillain Barre Syndrome, Im not sure if I'm allowed to give you the actual web address under the Terms & Conditions of h2g2 -- I only joined tonight!! But if you post a message to me direct, I'll get back to you -- maybe we could see if other people in h2g2 have it, write an article etc.
If you've not heard of GBS, it's a form of Peripheral Neuropathy; quite rare, your doctor may not have heard about it.
Do get back to me if you want more info; or just to chat & don't despair -- I know how frustrating it can be!
Take care, all the best, Terri.



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Subject: Wht happened to the h2g2 Medical Team?
Posted Jun 17, 2001 by Kampai gai-jin Bossel-san -- (off to Japan) Post: 1


The h2g2 Medical Team used to "live" at http://www.bbc.co.uk/h2g2/guide/U116739, but now it's, err... dead
Guessing from the U-number, they were nothing official, but... how about sending them (at least them, if you cannot afford to invite *all* lost researchers back in) an awakening kiss or at least the invitation eMail?

There's lots of medical entries in the system, and we need them!


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Subject: Wht happened to the h2g2 Medical Team?
Posted Jun 17, 2001 by Kampai gai-jin Bossel-san -- (off to Japan)
This is a reply to this Posting.
Post: 2


err..., yes, and if they returned, how about inviting Mark Alexander http://www.bbc.co.uk/h2g2/guide/U175551 to join them?


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Subject: Wht happened to the h2g2 Medical Team?
Posted Jun 18, 2001 by h2g2 Support
This is a reply to this Posting.
Post: 3


The Medical Team was a collection of doctors who were involved in setting up a dot.com enterprise, and we were in negotiations to implement their site using our technology. Now that we're in the BBC, that relationship can't exist any more, so for business reasons we no longer work with them, but they gave us copy in return for, well, for a potential business deal.

This is obviously no longer the case - pity, but there you go.

Mark


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Subject: Wht happened to the h2g2 Medical Team?
Posted Jun 18, 2001 by Kampai gai-jin Bossel-san -- (off to Japan)
This is a reply to this Posting.
Post: 4


no any more


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Subject: Wht happened to the h2g2 Medical Team?
Posted Feb 26, 2003 by Terri & Yoda, cheese box creators extraordinaire (ferrets & mandolins a speciality.)
This is a reply to this Posting.
Post: 5


Are there still no s? How about s?

I'm somewhat concerned since I'm involved in setting up a page for people with physical problems "De Myelin Nation"A889194

--I actually came here to see if I could get my invite to the Aces Forum sent to me by email, I've been an Ace for months now, & seem to have slipped through the net, it was unforrtunate I happened to become an Ace at the time Abi was on jury service!

--hope I've come to the right place!

Terri



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This is not good.
It should be yikesed don't you think?
*I've never yikes-ed* Please don't make me.....

Maybe yikes it yourself Terri?

The Demyelin Nation does not support this original article.
Comments on the end 2 pages of the "Cheering Section" thread.

If a debate is thought to be needed by others, by all means continue.

Sorry! Discussion of article is on the "sign up" thread NOT "cheering section" thread as stated.

Subject: SIGN UP HERE!
Posted 5 Days Ago by Pyrotrope
This is a reply to this Posting.
Post: 187


yay! Cheers.

I've been reading an article called "neuropathy" by MrMondayMorning and h2g2 Medical Team. Anyone else think this one is a crock?

P.

Pyrotrope!!!

That bloody article was the first thing I read on hootoo, I have been fighting to get the damn thing pulled since November 6th 2002!!!

If you go into this w****r's space who wrote it, he is a sicko on a mission! The h2 g2 Medical Team no longer exists & all in all, it is an apalling oversight!

With a hell of a lot of dredging, I can resurrect the backlog, but I assumed by now it had been pulled. Sadly not, so some poor soul who quite possibly has GBS may still be led up the garden path!

Is my original reply to the poor newbie still there?

Abbi may well remember this, the first, but not the last, time I kicked up a stink on Hootoo!

The previous two posts are copies of the start of this current debate, when Pyritrope joined De Myelin Nation.

zdt

Ist July 2003

post #8 was a response of Terris .
I pasted without including Terri name and info---sorry

Why not post your concerned to Editorial Feedback, at the last meet Anna told me she was worried about incorrect medical information being in the Guide, they're very nice, no need to be intimidated by them guys!

A388334 is the place to go, start a new conversation, outline your concerns, and the rest of you go in and support it!

Please lovely Baby , can you start it off?



Terri.

That's done then, hope I've covered everything now if you'll all go over there and tell the nice sloping people how upset you were by the artilce so I don't seem like a complete fool please! F47997?thread=296534

Hi all,

I'm not a doctor, and and don't have any scientific knowledge that would be of use here, so I don't want to go wading in and potentially making matters worse. However...

If someone wants to collate everything that needs changing here (indicating the section/paragraph the changes need to be made to) and paste it into a posting here in one big chunk, I can have a look at it. If there's a way this entry can be saved, I'd prefer to spend some time doing that than just junking it, if at all possible.

Jims
Not a

Thanks Jim! I'll have a discussion with Terri and the guys on this and we'll get back to you!

I'll be very willing to collaborate with Z, plus anyone else, especially Pyrotrope (sp?) & Abbi, thanks Jim, we will get back to you on this.

Watch this space!!!

Terri.

Yup!!! I've got a fair bit of info, more than I wanted in fact - just need to sort through it all and I'll be on board.

P.

Hi Pyrotrope,

jolly good!



do squeak if you need anything.



zdt

Great Developements!
Thanks to Jim and Z and Pyrotype and Terri!
YAY!
I will wait for further instructions.
Am I right in thinking Pyro has the handle on it at this time?

Um, not sure if I have 'the' handle, lol, but I have 'a' handle at least - if the rest of you guys are happy with that - I'll submit some rough draft very shortly.

I am *so* glad we get to do this. Thanks Jim, and all.


P.