Idiopathic Peripheral Neuropathy
 

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.

that is the adventurous part of PN. No one knows how or if or where your PN will progress. It may progress, stay the same or even get better if you treat the cause effectively. Have you been given a thorough work up to determine a cause? If you go to lizajane.org you will get an idea of what tests should have been done for your type of neuropathy.

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.

As far as a comprehensive list of tests goes--
 

--the Liza Jane spreadsheets are probably the most complete; they've been put together to provide tests to investigate neurological symptoms from many possible causes (not just peripheral ones, but central nervous system ones as well), and to track those results over time for patterns:

www.lizajane.org

Also, up in the Useful sites, look under my name for the links to Dr. Latov's/Quest's serological tests for neuropathy, and the Poncelet protocols for the diagnosis of neuropathy.

It's been my experience that unless one in under the care of a research-oriented neurologist at a tertiary center or teaching hospital, rarely is an extensive enough work-up done (many doctors are just not familiar with the many possible causes of the condition).

Most neurologists are clueless as to the proper care & treatment of PN.
Idiopathic is too often labeled when the doc is bluffing, clueless, and wants you to gop away.
Listen to Glenn.
Go to Lizajane.org to see all the tests that should be done.
Get yourself a neuro who is a specialist in PN & does research.
Johns Hopkins, The Jack Miller Center, Cornell-Weill, & Mayo Clinic (my last choice), are good places to find a good neuro.

That may well be true but I am limited to what is available in New Zealand.

I am still trying to access Lizajane.org but it comes up with a Network Error.

hi there numbfoot, I am a fellow kiwi :D

Personally I have found the treatment in NZ for PN is pretty good - I have had all the testing I need in terms of nerve conduction studies, emgs etc, which I am sure you have had too. I have sensorimotor axonal neuropathy, meaning that if effects both sensation (numbness) and motor function.

It just depends on how aggressively you want to search for a cause - but one thing that I can absolutely guarentee is that knowing the cause doesn't necessarily make the treatment for the neuropathy any better. I have lupus, which causes my neuropathy, I have absolutely A grade treatment for my lupus but it does absolutely nothing for my neuropathy. My neuropathy still progresses despite treating the cause, go figure.

What your progression will be is one of those unanswerable questions - there is just no way of knowing.

I won't repeat my story here, it is rather a lenghty one, but if you search under my name you will find it easily.

What part of NZ are you in ? I am in Auckland

cheers

raglet

Hi raglet

Thanks
I am in Central Otago.
I had the tests you mentioned then spent a week in Dunedin Hospital where they done a whole heap more including Spinal Tap & Nerve Biopsy.
At one stage they had me examined by a whole team of Neuroligy type people.

After reading some of these posts, I feel rather underqualified to be on this forum.

I do see--
 

--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

If you can't can't get the lizajane site to open, do you have an e:mail address? They have been very helpful to me and I would hate for anyone not to be able to get them. I would be happy to scan and e:mail to them. Just PM me if you have e:mail...

first off...
 

Have you had a B12 test? if so what were your numbers?
"Normal" is not enough... some doctors are behind on what is really "normal".

This is the first stop in fixing any neuropathy.

Hi Numbfoot,

We have a lot in common. I live in Sydney, am also 55, male and a cyclist and the neurologists I have seen have not been able to find a cause of my neuropathy. Mine started in my feet in August 2005 and seemed to be associated with cycling. My early symptoms only appeared after bike rides. At the time I also had reflux problems for which I was taking proton pump inhibitors (nexium or somac). Proton pump inhibitors are known to inhibit B12 absorption. My B12 measurement was at the high end of normal (a single measurement), but after lots of reading I found that people who exercise regularly can have high B12 measurements but still be B12 deficient. B12 measurements are poor indicators of deficiency in sedentary people and completely unreliable in people who exercise regularly. I arranged for a gastroscopy at which helicobacter pylori (which can inhibit B12 absorption) was found. After I started taking B12 (and folic acid and a few other supplements) my neuroathy stopped progressing and improved a little. I am now left with some residual (and variable) symptoms which are not unbearable. My neurologists laughed when I told them I was taking B12 but were surprised when I told that that my neuropathy was improving. B12 is harmless so my advice is start taking it (at least 1000 micrograms per day) ASAP. There is lots of info on this forum about B12 types and doses etc. BUT ... before you start on B12 supplements get your homocysteine and methylmalonic acid levels measured by a reliable lab. If these are high you almost certainly are B12 deficient. I did not get these measurements done, so I am still not 100% sure that B12 deficiency caused my neuropathy (I am about 99.9% sure). Paul Golding has some more interesting info on homocysteine and methylmalonic acid at http://www.paulgolding.id.au.

Hope all this helps.
Good luck
Martin

Thanks for your replies, I am talking all your advice & suggestions into concideration.
My B 12 test was normal as were all of the others.

Finally managed to get onto the lizajane site.
Looking at it now.

A B12 measurement is almost a random number. It does not correspond well with functional B12 status and should not be believed. I and others on this forum can give you proper peer-reviewed medical references that confirm this. If there is any possibility at all that you have a B12 deficiency then you really should start taking a supplement, after, if possible, having your homocysteine and methylmalonic acid measured. These measurements (particularly methylmalonic acid) are much more more sensitive and specific for functional B12 deficiency than a blood B12 measurement. (I had to spell methylmalonic acid for my GP when I asked for the test - most doctors don't know about it). If you are B12 deficient, then the longer you wait before starting supplements, the more permanent nerve damage you will suffer. If you are not B12 deficient you are extremely unlikely to experience any adverse effects of supplemental B12. As far as I know there are no documented adverse effects.

Martin

the word "normal"
 

Is useless when it comes to B12. Some doctors tell you normal when you are at 200... and this is WRONG...you can be suffering damage at that level. Most doctors have NOT kept up with new information, and labs continue to show lower ranges as "normal". So get your numbers...to be sure.
Anything below 500 should be treated. And some feel that anyone with neuro symptoms who tests borderline to above 500 should also take B12.

OK time for action.
I will contact my Neurologist & ask for copies of all my tests.
I will also get my B12 retested & homocysteine and methylmalonic measured.

Just an update.
My Neurologist wasn't able to come up with any more test results than I already had.
There was no record of, homocysteine and methylmalonic acid levels having been taken.
I have an appointement with my GP in 2 days to arrange getting this measured & also to get more precise B12 figures.
I will discuss with him the relevance of getting any other tests redone to obtain more precise results.
I had started taking B12 supplement last week but have stopped now in case it may influence any further test results.

I always err on the side of caution.
As far as B12 is concerned, anything under 600
is suspect, in my book.
B12 taken in the Methyl-cobalamin (not cyano-cobalamin) form, is the best absorbed type of B12 supplement.
I take it sub-lingual (under my tongue) 1000-2000mcg/day.
I've been taking it for over 6 years, and it has helped slow the progression of my PN, significantly.

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

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).

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.

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.

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.

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

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 :)

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!

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.

Numbfoot?
 

KEEP AT IT!
You've got a way to go, in case you've not gathered it.
The one good thing about 'methycobalamin' B-12 [sp?] is that it's like vitamin C in that you can't overdose. Excess goes out of you and doesn't hang around to cause problems.
Brian had posted a while ago, [humm, don't remember exactly when?] about getting a particular B-12 he wanted thru customs from the US - it was a lengthy post...Brian do you recall it? If not I'll look it up.
Don't forget tho, healing nerves takes about 10 to 50 times longer than it took for them to get damaged or die.
Hope this helps. - j

Hi Dahlek, yes there was trouble importing methylcobalamin into Australia a while ago, but you can get it through our customs these days, we can even buy it from our own compounding pharmacies now, but it is very expensive, it is much more cheaper to import it in from iherb.com.
I wouldn't have a clue about New Zealand customs though, or the availabity of it in New Zealand.

Brian :)

I got some from a Health 2000 shop: "Cherry Flavored Sublingual" 1MG - 60 Tablets $19.95 www.sourcenaturals.com

yes, Brian, but the hoops that....
 

you went thru could flag any possible problems for Numbfoot in advance.
Face it man! You 'invented' that wheel? Having others learn and benefit and get an IDEA of the pitfalls and pratfalls that mite be encountered [I remember you had more than one?] are learning experiences to be shared.
Something folks living in the U.S. don't trip over and take for grannted.
The fact that you'd learned what the 'hoops' were, and what the questions were to ask are things that are read by many who don't regularly post, just visit and learn. And they learn a lot!
While each country or part of the world is different, some of the basics usually apply?
Ah....we slog on or whatever. Hugs to all! - j

Numbfoot? You will just LOOOVEE the imitation cherry flavor! That is the one aspect I hate about the sub-linguals! Cherry, orange, rasberry, whatever... Try it, see if your #'s go up, bet they will. -j

2000mcg-5000mcg sublingual, methylcobalamin-daily.
(no one ever overdosed on B12 , excess is
excreted in urine, like Vit. C)
Should get those B12 #'s up in 30-60 days.

Dahlek, you can certainly learn a lot from other people sharing their knowledge & experiences, without gaining knowledge off Rose, Mrs D, Glentaj, David and many others, i am sure i would be still suffering with neuropathy now & not forgetting Bob B who pointed me in the right direction as far as getting a neuro that is a neuropathy expert, not just a normal neuro, all contributed to my wellness i am lucky enough to be able to enjoy these days.
I hope you are going along ok these days.

Brian :)

Have just started a new part time job which requires me to be on my feet more often. I normally wear open sandals which I find more comfortable but for safety I now have to wear a enclosed shoe. My right foot feels hot & like it is in greasy sand most of the time.
Any ideas on how I could deal with this.
My previous job was driving, so sandals were ok. Main problem there was not being able to feel the accelerator properly.

Just reviving this thread.
I'm still alive & kicking
Since November my Neuropathy is slowly progressing to upper thighs, lower back & palms of hands. My right foot is still the worst area. I have no pain, although occationally right foot can get cramp like pain, usually in bed at night.
I am still taking the B12 but have cut down to 1MG per day, having got my level above 500.
I am worried about loosing strength in the right ancle & so are keeping up with the cycling as often as possible. Like everything that you have to do, it is becoming a chore & I find myself having to force myself to do it. I tell myself that I am still so much better off than others who can't get around at all.

numb feet
 

I don't remember if I read about deformation in your feet? high arches?

Did you had LP? wha were the findings?

No deformation anyware.
Other than PN I am in perfect shape for my age.
What is LP?