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

numbfoot 05-04-2012 07:11 PM

Well it's about 12 Months since I updated this thread.
No further progression with my PN since then, which is good I suppose.
I am still only taking Jarrow's Methyl B-12.
I realize my symptoms are relatively minor compared to a lot of you guys, but I'm certain staying active is helping me a lot.
I have cut down on my bike riding as the vibration wasn't helping my hands.
The carpel tunnel was being stimulated.
With the Winter coming on I have bought a "Total Gym" as recommended by Chuck Norris. This can be set up to do a variety of exercises at various levels & I use it every morning.
Also I am forcing myself to take a decent walk at least once a week.
I'm not talking about just round the block either.
There is a reasonable size hill not far away which I go to the top of.
Initially I had to force myself to do this & my feet felt terrible. Like having socks full of greasy sand. Also I was tending to stumble as my right ankle was loosing its strength. Then when I got hot my hands felt like they were inflated.
I have been experimenting with meditation & find I can now almost ignore the feet discomfort while walking.
Unfortunately I am not having the same success with my hands. If I keep them up by tucking the thumbs through my pack straps it helps a bit.
Both my little fingers are now doing their own thing. They are almost totally numb & getting very weak. They tend to stick out from the others & get in the way.
I am doing strengthening exercises on them to try & help them, but seem to be loosing the battle. It can be interesting putting gloves on.
So I just thought I would share this with you guys & if there is anyone else who is at a same or similar stage of PN, I would like to hear from you.

pinehurstcharlie 05-06-2012 09:56 AM

Quote:

Originally Posted by jarrett622 (Post 393700)
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.

YOu sound like me as far as the burning and the sitting can drive me up the wall later in the day but sometimes if too long anytime of the day. So I stay moving during day as much as I can. So now you see less of it with your supplements etc? Which do you think helped the burn the most?

ritt 12-07-2012 03:23 PM

most recent posts on PN
 
Where Can I find the most recent psts on PN?

Ritt

mrsD 12-07-2012 03:49 PM

Quote:

Originally Posted by ritt (Post 937674)
Where Can I find the most recent psts on PN?

Ritt

This link is to the main page of PN forum. The subforum is at the very top.

http://neurotalk.psychcentral.com/forum20.html

caringaj 12-12-2012 05:02 PM

Quote:

Originally Posted by numbfoot (Post 384913)
Hi
I am a 55 yr old male who has been diagnosed with Idiopathic Peripheral Neuropathy. It started in my right forearm, and then progressed to my right shin, top of right foot and big toe. Once it started to effect the left hand side of my left foot I sought medical advice, but by the time I got to the neurologist I had it in my fingertips also. I was told that as it is Idiopathic, (having no known cause) there is no known cure, therefore no medication was prescribed. That was 12 months ago, since then the Neuropathy has taken over almost all of my right foot and progressed up to my right knee, fortunately no other areas have changed. While I am aware the effects of this condition vary between individuals, I am egger to hear from anyone who may be able to enlighten me on possible further progressions.

I also have idiopathic PN in both my legs from the knee down. I have had this condition for about 6 yrs. Dr. had me on gabapantin for several years, but I never felt relief. About a yr. and 1/2 ago he put me on Lyrice. I take 50mg. 3 xs a day , and I can honestly say I am at least 70% better. It is definitely worth a try.

numbfoot 06-15-2013 04:11 AM

Gosh, looks like it's about 12 months since my last post.
I've been busy at work but have recently sold the business, so have more spare time now.
So here is an update.
I've kept up with the exercise's & have retained the muscle tone in my ankles & wrists.
I have willed myself to ignore the discomfort in my feet, but my palms & fingers are my biggest problem now. Super sensitive in some areas & almost numb in others.
My little fingers have a mind of their own, which can be interesting when typing.
If they get any worse I might have to tape them to the next fingers to keep them under control.
Fortunately I don't have pain anywhere. Occasionally I get cramp in the lower legs, so have been taking Magnesium capsules. Seems to be helping.
Only other thing I am taking is the B12. Last test results showed levels at 1393.

elisaunt 06-21-2013 08:12 AM

Nobody is underqualified!!
 
Hi: I feel your pain (literally). My PN is also idiopathic, however, I am in the states so have some options. I agree, in general, though, that general neurologists just don't know enough about it to do anything helpful. That being said, mine did start me on Cymbalta which helped my feet a great deal. Now, two years later, my arms are starting to be affected. I am having another EMG on my arms done soon. I am seriously considering going to Mayo Clinic (a bigger hospital with more specialities, tools, etc) to get everything ruled out. I think, sometimes, we may have more than one disease or problem going on and it is often missed. Good luck!! And, I hope you, like I am, are glad for sites that feature folks with similar problems!! amy

bckay1 06-09-2014 12:02 PM

Suffering 6 years of burning in my. Body.
 
Quote:

Originally Posted by elisaunt (Post 994086)
Hi: I feel your pain (literally). My PN is also idiopathic, however, I am in the states so have some options. I agree, in general, though, that general neurologists just don't know enough about it to do anything helpful. That being said, mine did start me on Cymbalta which helped my feet a great deal. Now, two years later, my arms are starting to be affected. I am having another EMG on my arms done soon. I am seriously considering going to Mayo Clinic (a bigger hospital with more specialities, tools, etc) to get everything ruled out. I think, sometimes, we may have more than one disease or problem going on and it is often missed. Good luck!! And, I hope you, like I am, are glad for sites that feature folks with similar problems!! amy

I have idiopathic neuropathy. I have been to the Mayo Clinic and they had no suggestions for me. It starts with a funny feeling in my palate. Like a pizza burn. Then my entire torso gets squeezed and feels like it's burning. Then my vaginal. Area starts pinching. Nothing helps except taking an Ambian and clonozepam and going to sleep. When I wake up it is gone. I have tried lyrics, cymbalta, and all the narcotics. I'm now on 600 gabapentin. Can't tolerate more. Marijuana doesn't do much either.

numbfoot 07-08-2015 07:04 PM

Update.
Two years since my last post.
Now 61.
My hands have got a lot worse.
Now getting pain, worse when the barometer is low.
Unable to work, so no income.
Fortunately my wife works part time.
I do all the meals.
Recently bought a cake mixer & have been getting into baking.
Just surprising what you can still do if you are able to take your time.

I'm still keeping up with the exercise.

Have been seeing a different Neurologist who appears to be taking a bit more interest in my problem.
Some recent tests including a lip biopsy have produced a positive for Sjogren's.
I was surprised at this, as I didn't have the common symptoms, ie dry mouth & eyes.
But have been told this is not always the case.
This was only yesterday, so my Neurologist has yet to decide weather to proscribe any meds.

mrsD 07-10-2015 10:39 AM

Have you been to a hand specialist?

There are various disorders of the tendons and fascia of the hand.
A hand specialist may be able to help you more in this regard.


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