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

numbfoot 05-04-2009 05:32 AM

Hey thanks for that, but I'll be trying my hardest to avoid having to get one.

mrsD 05-04-2009 05:55 AM

Quote:

Originally Posted by numbfoot (Post 505352)
Thought I'd better get back onto my own thread.
I am concidering adding Lipoic Acid to the B12 I am taking, in the form of Javenon.
As yet can't find any in this country.
Can get Alpha Lipoic Acid in 200mg capsuals.
Not sure if this suitable, so havent bought any as yet.
Another name has has just been given to me, Lephratax.
Looks worth concidering on google.
Did a search for it on this forum but nothing came up.
Anyone have any experience with it or know if it may help with my problem.

Holy Smokes....that is expensive!

I believe iherb.com ships to New Zealand.
http://www.iherb.com/info/shipping/ShipNZ

You'd do better with r-lipoic acid (improved Alpha lipoic) and benfotiamine IMO.

numbfoot 05-04-2009 04:29 PM

Thanks mrsD, I'll sorce some of that.
Any thoughts on the Lephratax.

mrsD 05-04-2009 04:46 PM

I don't get a good feeling for the Lephratax.

When herbs are used, they are NOT used in milligram amounts.
All those herbs listed are teensy amounts. Any active ingredients, which I don't have the foggiest as to validity, would be in there in ultra teensy amounts (microgram perhaps).
http://lephratax.com/ingredients.html

I just don't think it is worth the money. I haven't had time to search all the ingredients.

You can search at this location:
http://cms.herbalgram.org/herbstream...onE/index.html

Commission E is the world gold standard on herbal extracts.

numbfoot 05-04-2009 05:51 PM

Thanks for that.
Found a NZ supplier for "Doctors Best, R-Lipoic Acid" & have ordered some.
$45 for 60x100mg.

kevin57 05-07-2009 03:37 PM

I know how you feel.
 
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.

Whoa!
Man can I empathise with you. I am a 52 year old male who started having problems about 3 years ago. Problems started in my right hand - numbness and burning and pain got so bad that after 2 hours of mousing (right handed machine designer) that I felt like throwing up and then started gabapentin - 900mg/day. Diagnosed as occluded ulnar nerve and had double surgery on my wrist (2" cut) and inside forearm (6" cut thru muscle) to cure the problem. Worked for about 6 mo. and then all problems came back progressed up past my elbow. After about 12 mo. it appeared in my right foot and started with the big toe going numb and then the whole foot followed (with shooting pain from the toe back to the heel). Next the left hand on top up to the wrist and left big toe and top of foot up past the ankle (all within about 6 mo. time).
I am now taking 1200mg gabapentin 3 times a day to control pain but if I miss a dosage pain in feet and right hand reminds me - aldo have burn thru even with this dosage. I was diagnosed last week with Small Fiber Polyneuropathy at the Cleveland clinic. I also have hypertension (160/100)
that is partially under control (was 240/110). A little anti anxiety medicine helps as well. Good luck and keep a posoitive attitude and I have found that sharing with others helps quite a bit - I used to keep it all inside but that is not the way to go.:D

numbfoot 05-07-2009 10:15 PM

Hi Kevin
Sorry to hear you've joined the club.
Sounds similar to me.
I found the pain stopped after I started on the B12.
Not saying it cured it, but thats when it stopped.
I have got pain relief but don't use it at all.
Was any cause for your Neuropathy found.

numbfoot 11-30-2009 09:53 PM

I see it's been 4 Months since I updated this thread.
Well the 60x R-Lipoic Acid went through the system un-noticed, so I've put them on hold.
There has been no noticable changes in my symptoms in that time.
I am still fortunate that I don't have any continuous pain. Occationally I might get a servere cramp like pain in any of the effected areas, but it only last a few seconds.
Regarding driving with an effected right foot. I can feel pain, moisture & temperature but not pressure. So I have a few problems driving a vehicle with a manual transmission.
Anyone else been down this road? (no pun intended)

Jack Futerman 12-31-2009 07:09 PM

Quote:

Originally Posted by glenntaj (Post 386262)
--that the Liza Jane website seems to be having problems; I'll contact her and see if she knows what's going on there. (It really is a very comprehensive listing.)

And don't worry, numbfoot, about feeling a little bit underqualified; we've all been there at one point of another. It's just that having this condition drives a lot of us to become experts in the area, and to devour information and literature, since so few of our doctors have a similar motivation. :D

Numbfoot
I have been suffering from idiopathic peripheral neuropathy for about four years. As a general rule the ideopathic variety of peripheral neuropathy does not get worse.
I have not seen any posts about how family members have reacted to the chronicity of this invisible condition?

numbfoot 03-18-2010 04:50 AM

Just an update.
I am a few months late replying to the previous post.
My family is very understanding of my condition.
We are fortunate that we are not directly reliant opon my income.
However I do still manage to generate a few dollars.
I have also taken over the cooking & have even managed to turn out some cookies & cakes.
My condition seems to have stabalised & hasn't changed much in the last 6 months.
I still take the B12 every morning.


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