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.