Here is a summary of my intro thread, to help sum things up:

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. I have been constipated for at least six months, or longer, now. I have gotten used to going days without bowel movements, sorry if that's too much information. I will occasionally have LRQ pain, and one night I woke up convinced I had appendicitis or something because it hurt so bad, but it ended up being diarrhea- which after that episode, immediately went back to constipation.

The only severe 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

Well now I have my MRI results back, and they have muddled things up even more for me. Despite the fact that the EMG report says "an old relatively healed radiculopathy that is possibly affecting radial nerves", someone from the neurology office called me and just said 'Your MRI was fine.'

What? Could they have just meant nerve-wise? I don't understand how an MRI of my cervical spine and brachial plexus could have NOT picked up the earlier identified C7 issue.

I'm so frustrated. I don't go back until August 2nd. Neuro wants me to get another EMG, this time in one of my feet, to confirm that the neuropathy really is peripheral. I'm almost considering taking all of my blood results and getting a second opinion with a rheumy.

The only thing they have identified FOR SURE so far is a B12 deficiency, and the EMG/NCV showed slowing in almost all of my sensory nerves, and a few of my motor nerves (in my arms/hands), so they're also confirming neuropathy, but seriously, can that be my only issue?! This is so frustrating.

I'm only 25 years old and I'm tired of this. Whenever my arm pain ("spams") get bad, the only thing I can do is grit my teeth, take my muscle relaxers, rub on a ton of topical pain creams, and lay on my heating pad until it goes numb, hoping it goes away. I can't even do simple things like sit down and eat or watch tv and wait for it to pass, I am in constant pain the whole time. It is without a doubt debilitating.

Until I can go back to the neuro, does anyone have any ideas? Does this sound like anything anyone else has/ has heard about/ knows about?