If you have the DNA mutation that
blocks methylation using cyano form
in injections will not work.

Methyl cobalamin bypasses this error.
It is thought today that 10-30% can
Be affected by this mutation.

Thanks Mrs. D, Brian and ginnie for your replies!

I'm sorry to hear that recovery can take so long, but at least I know what I need today.

I'll just keep updating my status on this page in case others want to read.

I have been taking 5000mcg/day (methylB12) in divided doses sublingually for the last 3 or 4 days. I also added about 1000mcg/day of dibencozide starting yesterday.

Today I got a B12 shot of cyanocobalamin. Within 15 minutes I was very drowsy, but stayed awake. Definitely felt a little 'out of it' or disassociated from reality. An hour later I just had to take a nap and slept for 2 hours. Hope this is a normal reaction. Just ate a bunch of potassium rich foods.

I've got a new appointment with another doctor next week who may be willing to bump up my B12 shot frequency to at least weekly.

Some of the numbness in my legs has improved slightly over the last day or 2, although they still feel very weak. New symptom yesterday morning (before taking dibencozide): sudden weakness/zapping in my forearms and hands. It made it difficult to squeeze anything and was pretty scary. Today my forearms still feel a little weak, but way better than yesterday.

I spare a thought today to those who have been dealing with this for a long time and those who have yet to discover their own B12 deficiency.

I just wanted to leave an update for anyone who might come across this thread in the future.

In about 6 weeks, I brought my B12 level up from 'less than 150' to 1300, which is above normal, but not dangerous. I took 2500 mcg Jarrow methyl B12 twice a day sublingually. I put a pill under my tongue and let it sit there and slowly dissolve over 60-90 minutes. I made sure not to swallow it, just let it sit under my tongue.

I only received one B12 shot from the doctor (cyanocobalamin). I didn't follow up with the shots because I preferred to get methyl B12 based on my research on B12 deficiency.

The numbness and tingling I was experiencing in my legs and arms is now pretty much gone.

My legs are still very weak, but it turns out I have another medical issue that is most likely causing that. I'll still take my B12, but I'm moving on to treating this other issue.

If you are recently diagnosed with B12 deficiency, I recommend you get the same methyl B12 form that I did. At least you know that it normalized my blood level after less than 6 weeks. For your reference, my physicians also tested me for folate, lyme disease, thyroid, and cortisol. All were normal, but you may want to request these tests as well. Take care!

Thanks for keeping us updated, I'm new to the site and I am also going through the Vitamin Deficiency issue. Currently I take a high dose prescription once a week for my Vitamin D and I have to get the homocysteine and methylomaic acid tests this weekend to confirm my low vitamin B, a couple of weeks ago it was at 285. I have achey joints and have nerve damage to my right peroneal nerve. I'm hoping the shots will help with everything. Due to my stomach ulcer I may have to stay with the shots, I'm thinking the ulcer may be the culprit in my defiency.

Hi SunnyWalk, Welcome.

Have you been treated with any antibiotics for the ulcer? If so, I would check them against antibiotics known/suspected to cause PN/neurological disorders. If not, and medications are proposed to treat the ulcer, I would check same, and have a discussion with your doctor about alternatives.

Doc

There is no upper toxic level for B12.

You can look that up on any valid site.

On the first post of the B12 thread on
the PN forum is a link to a study published
by a doctor demonstrating 13 mcg are absorbed
from a 1000mcg oral dose. This is hardly
An alarming amount. Also on that table of
that paper is that a 1000mcg injection
results in only 150mcg measured in the
Serum.

You can copy that and give it to your
Doctor.

The only contraindication I have seen
is to not use B12 in patients with polycythemia
Vera which is a rare blood disease and
would show up in your testing so far. It
results in too many red blood cells.

Responding to Dr. Smith

When I was first diagnosed about 10-11 years ago I was taking Prevacid for a few weeks then I just stopped. When I had occasional flare ups I would buy OTC products. I didn't take anything for a long period of time. I was also heavy on popping Ibuprofen whenever I felt pain, I constantly took alleve or excedrin for my frequent headaches.

If you've been DXed with peptic ulcer, you've been taking the wrong things—ulcers can be caused/exacerbated by meds like aspirin, ibuprofen, and naproxen. I gave myself a bad case of IBS by taking too much ibuprofen, and nearly lost half my bowel. Hopefully, you can find a gastroenterologist that will work with you to find a better treatment/cure, taking your PN into account.

Because of my IBS, I only use acetaminophen. Due to its harshness on the liver, I also take N-acetylcysteine (NAC) to reduce/negate that effect. I get tested regularly, and my liver is fine.

Some of those other meds can also cause rebound headaches. If your headaches are something else (e.g. migraine, cluster, et al), you might consider seeing a headache specialist (practice limited solely to headache/migraine—not just a run-of-the-mill neurologist). I suffered from two types of chronic headaches for years before finding a good headache guy who knew his stuff.

Doc