Hey all, I'm new, both the boards, and neurological diagnoses. For about ten years I have been having severe upper arm pain that has been getting worse and more frequent, which my old doc wrote off as 'muscle spasms', then gave me flexeril and sent me on my way.

I switched to a DO, who immediately had me do an upper extremity bilateral EMG w/ NCV. What they found was that I've got some form of dyemyelineating sensory greater than motor polyneuropathy, and also a C7 radiculopathy that is affecting my radial nerves (ie: causing my "spasms") .

My PCP did a lipids panel and I had her add in B12, since I didn't eat meat for three years (until I got the results back!) -my B12 levels came back at 150. I've been getting b12 injections, and the neuro says I will probably have to get them forever. I'm almost to my once a month's now though, so that's good.

Then the neuro ordered some more blood work- ANA, sed-rate, RA factor, and folate. They said all those came back normal, which was actually more distressing to me, since I would rather them find something than be back at square one. I have pretty severe back pain all the time (upper and lower), the neuropathy, and I was convinced the autoimmune stuff would come back positive, because my immune system is terrible- I am constantly getting colds and sinusitis (three times in the last six months or so), and my uncle had RA, so it seemed likely. I am always very fatigued, headachey, and often, but not always, have low-grade fever. I also have quite a bit of trouble breathing, but I am also an ex-smoker and my CO2 levels showed at 17 in my bloodwork.

The only pain I have right now (that isn't back related) is in my left tricep, but my hands do go a little numb from time to time, and sometimes if I'm doing something like holding my car keys, they'll just slip straight out of my hand.

Now I am back to being frustrated. I have to have a two and a half hr ish MRI tomorrow for the other half of it- they're doing my cervical spine, and my brachial plexus with and without contrast.


I am so frustrated and tired of being in pain. Does this sound like anything to anyone? Can B12 deficiency really be the one and only sole cause of this? My neuro told me that B12 def/neuropathy is usually more of a symptom than a disease within itself. I would rather be told I have lupus or RA or ss than have to wonder all the time. Ugh

Taking methyl form (active) B12 may be more useful for you
than injections.

Here is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

One cause of low B12 may be a failure to methylate cobalamin into the active methyl form. This is a genetic failure, and when people show up here with such a low result as yours, it begs the question as to if this is a cause. A DNA test will show if you fail with MTHFR methylation.

A second cause is long term use of acid blocking drugs. This lowers and prevents acid which is needed to facilitate B12 absorption.

A third cause is gluten intolerance or Celiac disease. There are blood tests for this also.

Methylcobalamin is available online, inexpensively, and with levels so low as yours, I'd suggest 5mg daily for 3 months. You chew them up and swallow with some water on an empty stomach. Wait 1/2 to 1 hour before eating. B12 cannot be absorbed well with food present (this is passive absorption to by-pass the errors present in the stomach).

This method works well, and within 3 months you should see higher levels than with injections. The new acceptable lower level in US is now 400.(over 1000 in US units).

Nerve damage from low B12 takes time to correct. It is a slow process.

Getting chronic colds and infections suggest a low Vit D level. That should be tested for and OTC D3 (not the RX form doctors typically give) can bring those levels up. The general rule is 1000IU D3 for every 10 pts to raise. The new lower acceptable level is 50 now.

These two nutrients are commonly low in the US. Try fixing them first, before doing other supplements.
This is our PN forum... there is alot to read there and information gathered by our posters over the last 6 yrs.
So be prepared to do some homework.

bskinner13,
I can sooooo appreciate the constant pain with no answers! It is 2:45 am, and here I sit typing one handed because the pain in my arm has woken me up. I'm ready for answers and pain relief!