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-   -   Idiopathic Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/55894-idiopathic-peripheral-neuropathy.html)

numbfoot 10-20-2008 04:28 PM

Rather than read back through all your posts, what is the extent of your PN & is it Idiopathic?

nide44 10-21-2008 08:41 AM

numbfoot,
Are you talking to me?
I'm a 64 y.o. male.
PN Dx'd 1998, major suffering since 1992-93
Random foot pain since the '80's.
Both feet & legs to the knee. Both hands and forearms.
Supposedly 'alcoholic' neuropathy (some disagreement there)
as "predominately sensory axonal polyneuropathy
of length dependent nature
". (Johns Hopkins)
CTS in both hands, right needing cortisone shots every 10 mos or so (to stave off surgery that I cannot give the recovery time to).
Pain levels, w/o meds 7-9. With Lyrica 3-5, sometimes a 2.
Pain under control well enough to continue to work - self employed (30 yrs).

numbfoot 10-21-2008 03:12 PM

Thanks Bob.
I was just wondering how more advanced your PN was than mine.
I also have CTS in both hands but it dosen't bother me since I stopped heavy work.

jarrett622 10-21-2008 05:35 PM

Quote:

Originally Posted by numbfoot (Post 385293)
Thanks for your reply.
I have had all the normal tests that are carried out in this country to establish what type of PN I have.
The website you refered me to has so far been unavailable to me.
You mention treating the cause. As stated mine is Idiopathic (no known cause)
I was told by my Neurologist to keep fit & healthy.
I still work but are finding it more difficult driving & walking.
I keep fit by cycling as often as I can but have to clip my feet to the pedals to make sure they don't slide off.
I would still like to hear of other areas of the body that can become infected. Also can the discomfort beome so extreme that some people finish up getting limbs removed.

By treating the cause it's most likely also meant that you need to treat the nerve damage. If you look at the top of the page here there are a couple of topics labeled as 'stickies'. There's a *lot* of good info there regarding vitamins and supplements.

I was Dx with idiopathic PN also. Since I've been on this board and began using the methods given in the stickies I've had about a 90% reduction in pain and symptoms. :) You may be able to achieve similar results.

numbfoot 10-21-2008 07:34 PM

Just saw my GP & had my B12 retested.
The result from my Sept 07 test was 271 hence the normal reading I was given.
Have started back on the B12 suppliment.
Have read through the stickies, takes a while, there is a lot of stuff there.
Taking all that into concideration I think I'll stay on the B12 & see how that goes for now.
My symptoms are still very minor compared to most of you guys.
I have some pain in the evenings, but havent resorted to the drugs yet.

jarrett622 10-21-2008 11:23 PM

Quote:

Originally Posted by numbfoot (Post 393562)
Just saw my GP & had my B12 retested.
The result from my Sept 07 test was 271 hence the normal reading I was given.
Have started back on the B12 suppliment.
Have read through the stickies, takes a while, there is a lot of stuff there.
Taking all that into concideration I think I'll stay on the B12 & see how that goes for now.
My symptoms are still very minor compared to most of you guys.
I have some pain in the evenings, but havent resorted to the drugs yet.

My pain has *always* been worse in the evenings. It may also have a bit to do with the fact that I'm much more active during the day so perhaps I simply don't pay sufficient attention to my feet and feel all the sensations. They get drowned out by what I'm focusing on. Right now my feet are irritating me but then whenever I sit in any kind of 'hard' chair my legs ache and my feet get that numb and burning feeling. It's nowhere near as bad as it used to be. Thanks to the information here. :D It used to be I *had* to have pain relief to get to sleep. It's not like it was...now I take a pain pill in the afternoon around 4:00 PM which seems to be the optimal time for me and I'm fine.

Silverlady 10-26-2008 02:03 PM

Good Grief
 
Numbfoot,
Your B12 is waaayyy too low. Anything under 600 is suspect in my opinion and I believe there are others who will agree with me.

Billye

Brian 10-26-2008 03:29 PM

numbfoot, best to take the B12 on an empty stomache & using a multi B supplement as well [ not at the same time ] helps the b12 work better as the b12 needs the other Vit B's.

Brian :)

mrsD 10-26-2008 03:36 PM

Ditto ditto...
 
Your B12 level is awful!

Take 5mg orally for at least month...on an empty stomach.

If you see improvement, you may eventually lower to 1mg a day, but for the time being...you need an intensive dose.

iherb has some very affordable prices for methylcobalamin.
Don't mess around with cyano form...as many people cannot use it effectively. Methyl is the activated form our bodies use.

Please do it ASAP!

numbfoot 10-26-2008 04:35 PM

Thanks guys, I'm on to it.
My latest B12 test was up to 340.
I'll get another done in a couple of months.
I have noticed an improvement in my hands & left foot since starting on it.


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