I'm beginning to get frustrated. Back in May/June I had my B12 tested at my request when I had an instance of being off balance. After doing some research, I learned that I may have been B12 deficient for 5-6 years. That's how far back I have had unexplained symptoms that specialists could never explain to me, like a burning mouth. Anyway, my numbers were around 163. After about 5-6 months of injections, I am up to 505. Still too low. In the meantime, I have developed severe back pain and vibrations down one left, numbness in leg & hands, tingling, pins & needles, etc. I went to a neuro who has done an EMG, lumbar MRI and both came back fine. This was followed by a brain MRI & cervical neck MRI. Brain showed lesions and a possible lesion in the bottom of the cervical MRI. Now I am going to have another cervical MRI along with a thoracic MRI with contrast. I was also referred to a neuro-opth to have my eyes checked and a spinal tap is on the table but pending results of MRI.

Here's where my frustration comes in. I still don't know why I am in so much pain with my back, I was told on the MS forum that lesions don't usually cause pain. I am hoping this new MRI will shed more light. More frustrating is that the neuro doc blew me off when he suggested MS and I pointed out the B12 deficiency can mimic MS. This is the 2nd Dr. to brush off the idea of B12 causing these symptoms. If it weren't for the back pain I would just stick with getting my levels up with my family dr and hope that the symptoms would get better over time. My question is, how on earth do you locate a neuro for this? I am sticking with this practice because I want to get all of the testing out of the way and hope that maybe they will find something but if they decide to just diagnose me with MS, what do I do then? I know there are MS specialists out there, is it possible they would be more up to date on B12 studies & take this more seriously into consideration? Or is it just a crap shoot and I have to keep rolling the dice until I find one who understands?

Thanks for the help. I feel like I am in no man's land right now. I don't really fall into spinal disorders or MS yet & there's not much out there for B12 deficiency.

Stephanie

I suggest finding a local naturopath first. They believe in B12 and are more likely to know of doctors who aren't arrogantly ignorant. Anti-B12 bias is very common among medical fools.

I think you could do better with active B12 orally--- methylcobalamin.

5mg a day on an empty stomach and your levels should go above 1000 within 3 months. Maybe higher.

People who have been as low as you were for a long time develop nerve damage. The B12 is transported into the CNS based on a concentration gradient in the serum. If you are really low, your nervous system would have been deprived too.

Your pain, etc may be the nerves "waking up" and trying to reconnect.

Have you looked this up? Combined degeneration of the spinal cord?
http://en.wikipedia.org/wiki/Subacut...of_spinal_cord

In people who have the DNA mutation that prevents methylation of B12 (your injections are cyano and need to be methylated) and methylation of folic acid...this neurological deterioration may occur.
Here is an article explaining the folate aspect:
http://docs.google.com/viewer?a=v&q=...Wj1iSwgItowcFQ

The mutation is called MTHFR mutation and there are now DNA tests for it. Estimates are that about 10% (some researchers now suspect higher numbers) cannot activate B12 or folate properly and need these supplemented by the methyl versions.

Both are available OTC as Metafolin and methylcobalamin.
An RX vitamin is also available with higher doses of methylfolate and it is called Metanx.

It appears you are not responding properly to your injections and it is a clue to me that you need other interventions.

I have medical links on my B12 thread here, so do please read it. Many doctors do not understand B12 well, they don't keep up with the new products or the research, so when that happens patients have to step in for themselves.
http://neurotalk.psychcentral.com/thread85103.html

Thank you MrsD. I have read a lot. I know how B12 can affect the spinal cord. Most of the time I feel like I know more than the Dr do. My family doctor feels that I am responding to treatment, he was hoping the numbers would be higher by now. I was hoping the neuro would understand, possibly want to treat the B12 more aggressively to see if I respond before going down other avenues like MS. I was the MRI mainly because I have seen severe damage from lack of B12 show up on MRI films.

I am aware of the methyl B12 and have considered trying the lozenge type in hopes of better absorption. I have been looking at them on Amazon. I have also heard that B1 can help with nerve repair but it doesn't stay in your system long enough. There's an oil soluble B1 out that is supposed to have better benefits. I am thinking it wouldn't hurt to try this as well.

Since B12 is OTC orally, you don't need your doctor except for testing.

Lozenge (sublingual) is not necessary if you take it orally instead, in high dose 5mg a day on an empty stomach.

The empty stomach is absolutely crucial for success. Chew 'em up and swallow. Only 1-10% is absorbed, but if you take it every day you will get higher blood levels than with injections.
Methyl form is the one to get. It runs about .30 a day.

The other thiamine is Benfotiamine. Both of these are affordably available on iherb.com I suggest the Doctor's Best Benfotiamine at 300mg a day, to start. Jarrow makes a good methylcoblamin too.
I'd consider r-lipoic acid as well, so you can read about it on here by searching the index page using the search in the upper right. keyword= lipoic acid. Stabilized is no more expensive and very effective at 100mg/day. Doctor's Best is stabilized form.

I hope you get relief from your pain soon westgrl. It is unbelievabale that their are neuros that don't know the relevance of B12. When this first started with me B12 was my family physicians first thought. Good Luck

It aggravates me to no end when you can type two simple words into a search and get thousands of hits, but bring it up to your doctor and many times they will act as if you have no idea what you're talking about. I've asked my doctors simple questions and gotten no response, not even an "I dont have an answer." I've just been completely ignored. I've asked what kinds of things I could do to help, and gotten "nothing, There's nothing you can do. But I have this medicine I can prescribe." Yet there are a million answers to my questions online.

I asked my podiatrist about getting orthotics. She had never mentioned the word to me. I had a neuroma in both feet, multiple ingrown toenails, and BUNIONS that the other doctor had said looked like my feet were 65 years old instead of 32. He said I would no doubt need surgery. My pod told me I had "no problems structurally in my feet" when I asked and I was not a candidate for orthotics.

My chiro had already said I might be able to avoid surgery if I got orthotics. So last week he got me orthotics. And he has been working on my feet in conjunction with neck and back. And this week I've had no neuroma pain, no burning. I am still getting cold feet/ankles/calves, however. If you looked at my feet, it would be obvious that I have structural problems.

P.S. Sorry, I have to say this. I have diagnosed myself so many times, 2 1/2 years ago I bought progesterone cream. I just knew I had low progesterone and thought I had a problem with low thyroid. I didn't use the progesterone, but a few months later went to a gyne specialist and was told (without testing) that I had low estrogen. And I was prescribed birth control and estrogen cream. (I said I wanted to get pregnant and they gave me birth control at 35 years old). My condition got somewhat better, and my face tingling and foot sole burning went away. 1/2 year after getting off the birth control, the tingling started again. The recurrent infections started again. EVerything got worse. I tried to get into an endocrinologist and was told to go to a gyne! I finally broke down and went to the hormone doc, who I now see, and got my hormones tested finally. I was low in progesterone and thyroid (T3). Ask a gynecologist about T3 and most times you'll get SILENCE. Your TSH is in range, your thyroid is fine.

Ahh, I feel better now that I've ranted a little bit.

I hope the vit B starts helping you! My hormone doc just prescribed me vit B injections but I may just start on the methylcobalamine. Sounds like a good idea (and the nutritionist at my whole foods store has told me to try it a couple dozen times).

Thank you mrsD for all your advice and information!

I'm looking for a competent neurologist who isn't just interested in a paycheck in the nearest city. I'm reading the ratings.

The first person in Google gets 3/5 stars. The first reviewer said she had to wait 8 months for the appointment, which lasted 10 minutes. Turns out he was a loser, arrogant, and useless.

In the summer I called to get an appointment with a family physician (prereq to see a spec like a neuro in ON, Canada). The waiting list was three months, and the secretary didn't know if the doctor was seeing new patients.

So I could wait a year to get 10 mins with a useless neurologist.

Un-believable!

I can't believe how much I've paid in taxes and how little I get for it.

I've already given up on the local naturopath who was only trying to sell me different tests and products.

I found a "doctor" who is a chiro but also trained in neuro. However, his tests seem limited, and he may be casting a wide net just to sell his chiro/other services.

It is terrible what we have to go throught to get what we need. Keep trying!