Most of us here seem to be on gabapentin. It primarily is a nerve dampener, it works for the burning and electrical zaps, not for the sharp pain or stiffness. I am one of the few here who do not have any side effects, weight gain, water retention, etc. I am on 1800 mg. daily. I do notice a difference if I forget to take it.

It doesn't help everyone, however, and some find the side effects intolerable. Lyrica is another possibility. Even with the anti-convulsives, many of us take pain killers for breakthrough pain. I take oxycodone to get though demanding days, long car rides, etc.

Has your neurologist thoroughly investigated the possibility that you have a hereditary neuropathy? I have CMT type 2 , and was about your age when the symptoms became painful. Has anyone in your family had trouble with their feet and legs, walking, worn braces, etc. it can set in at any age and varies greatly even within families.

My last question would be whether you are or have been on any triglyceride or cholesterol lowering medication. While I have some pain and usually use a hiking pole for balance, when I was on Tricor I could barely walk and was in intense pain with no balance at all. My neurologist suggested that I might want to go off that. I improved immediately, but it may have started a decline because my CMT has progressed quickly since then, which is unusual.

Is stiffness and difficulty going up steps or hills among your symptoms? I am losing the ability to go up stairs at all, it is vey painful. I also tend to catch my feet because I drag them slightly. If this sounds like you, investigate hereditary sensory motor neuropathy or CMT.

I hope that you get some relief

Do you know your B12 numbers? Slightly low to a doctor today, could be significantly low, because the lab ranges are so low.

1000mcg may be rather low if you are very low.
For people who have damage, and are low 5000mcg a day on an empty stomach will provide more response. You may want to find out your actual result for that B12.

Did you have Vit D tested too? That would be a good idea as well.

--I'd check on the completeness of the work-up (I suspect I know who you saw at NYU) with the Liza Jane spreadsheets:

www.lizajane.org

Unfortunately, unless there's a screamingly obvious cause of small-fiber neuropathy, such as diabetes, it can be especially hard to pin down the cause (predominantly small-fiber neuropathies have a higher "idiopathic" rate on first and second-line investigation than any other type).

Thanks! My blood test results are on their way to me so that I can review them. I did get a copy of the prescription for the blood work-up and my doc had checked off a dozen things to check for, plus wrote in another half-dozen, so I believe it was fairly complete.

Thanks for your response!
APJH

[QUOTE=mrsD;883295]Do you know your B12 numbers? Slightly low to a doctor today, could be significantly low, because the lab ranges are so low.

Doc said my B12 numbers were at the low end of the normal range. I started taking 1000mcg today, as directed. I see my regular MD next week and will ask him if he thinks I should increase it.

Thanks for your response!
APJH

Are you taking cyanocobalamin or methylcobalamin?

When using oral you should take on an empty stomach as food will block absorption.

Here is the B12 informational thread with medical citations:
http://neurotalk.psychcentral.com/thread85103.html

Low end of the old normal range is at or below 200.
The new cut off for normal is 400 (US units)
Methylcobalamin is best now, because the cyano form has to be converted to the methyl anyway. If you have a genetic error in this conversion (which is pretty common--- 10-30% of people have this called the MTHFR polymorphism), you cannot make methyl form from cyano and it won't work. Methyl form is very inexpensive and affordable and available online at many outlets today.

Since only about 10mcg is absorbed from 1000mcg oral, it will take a while to get up to a better level. Hence the higher dose will work better and faster. But that is your choice after all.
The oral absorption only really works well on an empty stomach as well, so make sure you do that at least.

We see so many people here who are not being given adequate treatment for B12 deficiencies. So if you know all this information already, please excuse me, but a large number of those coming here are either never tested, and/or never treated properly. Many doctors don't even know what methylcobalamin is (the biologically active form for B12).

Hi mrsD. My B12 number is 270--according to my doc, that's the very low end of the normal range. So he thinks 1000mcg a day is enough for me.

My doc requested more blood tests, specifically to look for other vitamin deficiencies that my neuro didn't test for, including vit D.

Thanks for your input!

Be well,
APJH

So then expect a long wait to raise your levels and then see results. I hope you are using the active methyl form of B12 and not the cyano. Some people cannot methylate cyano version to its active form so it will work.
You must take it on an empty stomach, as presence of food impairs passive absorption in the intestine.
The new cutoff for "normal" now is recognized as 400. So you are well below that.

Only about 10mcg will be optimally absorbed orally from 1000mcg oral. There is a study that measured this:

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

For people with long term low B12, faster treatment makes more sense. You don't just need to bring up a level, you need to replenish all your tissues.

But it is your decision in the end.

Hi Susanne. Thanks for your response. What is CMT?

We have no neuropathy in our immediate family, though I may dig a bit deeper into this possibility.

Thanks again for your response. This is all a big mystery to unravel!
APJH

CMT is Charcot Marie Tooth, also known as hereditary sensory motor neuropathy. There is no way of knowing how many idiopathic cases are actually hereditary. I was not able to get medical history from my father which delayed my diagnosis,but many people do not realize they have it, or it may even skip a generation. How are you on steps? Are the muscles in back of your legs unusually tight?