[Robert L]

Three months ago It started with tingling in hands and feet. GP did blood glucose and B12. Glucose normal, B12 208. GP said both normal and did nothing. Waited six weeks as PN progressed rapidly returned to GP luckily he was on holiday. New GP did vibratory test and recognized low B12. Four weekly injections of B12 given. Regular GP still says it is not B12 and that it is normal. Symptoms have almost vanished from hands and feet. Also started oral B12 methyl cobalamin 1mg daily. Injections are finished but feel symptoms may be coming back. Do I need more injections?

Now going to Neurologist for conduction tests. What will they tell about B12?
What questions should I ask and what tests should I request?
Thanks to everyone here. It is scary to read all the posts but without this forum and pub med I would be lost. Thank God for the fact my regular GP went on holiday and the replacement was smart. Still not out of the woods as muscle twitches have started.

[mrsD]

I believe if you bumped up to 5mg methylcobalamin a day on an empty stomach you could drop injections.

It takes about 3 months to show improvements. You could get
retested to see how much you improve. Stop all supplements about week before testing, to prevent false elevations.

You should be above 400pg/ml . Many here test around 1000 after 3 months.

You might consider the DNA testing for MTHFR mutations. Many people have this, and it affects folic acid too, and neurotransmitter synthesis and metabolism.

[Cliffman]

Originally Posted by Robert L

Three months ago It started with tingling in hands and feet. GP did blood glucose and B12. Glucose normal, B12 208. GP said both normal and did nothing. Waited six weeks as PN progressed rapidly returned to GP luckily he was on holiday. New GP did vibratory test and recognized low B12. Four weekly injections of B12 given. Regular GP still says it is not B12 and that it is normal. Symptoms have almost vanished from hands and feet. Also started oral B12 methyl cobalamin 1mg daily. Injections are finished but feel symptoms may be coming back. Do I need more injections?

Now going to Neurologist for conduction tests. What will they tell about B12?
What questions should I ask and what tests should I request?
Thanks to everyone here. It is scary to read all the posts but without this forum and pub med I would be lost. Thank God for the fact my regular GP went on holiday and the replacement was smart. Still not out of the woods as muscle twitches have started.

Robert imo you are very lucky to have found out it's B12 causing your neuopathy. According to what I have read you will need either the injections or B12 dosing orally for the remainder of your life. Please purchase the book "could it be B12"? it's all explained in detail.

Hope this helps.......

Cliffman

[zkrp01]

Originally Posted by Robert L

Three months ago It started with tingling in hands and feet. GP did blood glucose and B12. Glucose normal, B12 208. GP said both normal and did nothing. Waited six weeks as PN progressed rapidly returned to GP luckily he was on holiday. New GP did vibratory test and recognized low B12. Four weekly injections of B12 given. Regular GP still says it is not B12 and that it is normal. Symptoms have almost vanished from hands and feet. Also started oral B12 methyl cobalamin 1mg daily. Injections are finished but feel symptoms may be coming back. Do I need more injections?

Now going to Neurologist for conduction tests. What will they tell about B12?
What questions should I ask and what tests should I request?
Thanks to everyone here. It is scary to read all the posts but without this forum and pub med I would be lost. Thank God for the fact my regular GP went on holiday and the replacement was smart. Still not out of the woods as muscle twitches have started.

if the Dr. starts you on Gabapentin(Neurontin) it seems to be the first line defense against the twitching, zapping, stinging, etc. It won't feel like it is doing very much good but the consensus of people say that symptoms worsen after stopping it. Some folks go over 3000 mg/d but you wont start there. The conductivity test won't tell you anything about your b-12. That test has to do with signal velocities from nerves to muscles. IF I am not mixed up on my recollections. I will have to supplement b-12 as long as I am taking Metformin for diabetes. Any time they draw blood, tell them you want to know your b-12, you need to get it up toward 900-1000. I'm not saying that 208 is symptomatic but I know that just a little trauma messed me up with b-12 at 119. If you lurk and read you will pick up that Alcohol is poison and eating funnell cakes is not good. Think damage control as it seems you caught it early. Good Luck, Ken in Texas.

[Robert L]

Thanks for the posts. Still doing well. Will ask for MTHFR test. More after conductivity testing. Very lucky so far.

[Robert L]

I have had the conductivity test and it was normal. My GP didn't even phone to tell me.
After four weeks on the oral B12 at 2mg a day my symptoms started coming back so I got a vial of injectable B!2 and started doing it myself. After two weeks symptoms are reduced again. Looks like I may have to use the injectable B12 but will try holding the oral one under my tongue to see if this works. It sure is scary when the symptoms come back. I really freak out.
My GP still denies it is B12 but I have seen two other GP's in clinics for injections that are more understanding. Out of six medical people in the last six months two understand PN and B12. There must be a lot of people misdiagnosed and suffering terribly.

[mrsD]

Yes, you are right on about that. Many do fall through the cracks and continue suffering.

If you decide to do under the tongue you need to do that on an empty stomach. The B12 (methylcobalamin) is dissolved in the saliva and absorbed orally. All oral B12 should be done on an empty stomach. (nothing much is absorbed sublingually).

Originally Posted by Robert L

I have had the conductivity test and it was normal. My GP didn't even phone to tell me.
After four weeks on the oral B12 at 2mg a day my symptoms started coming back so I got a vial of injectable B!2 and started doing it myself. After two weeks symptoms are reduced again. Looks like I may have to use the injectable B12 but will try holding the oral one under my tongue to see if this works. It sure is scary when the symptoms come back. I really freak out.
My GP still denies it is B12 but I have seen two other GP's in clinics for injections that are more understanding. Out of six medical people in the last six months two understand PN and B12. There must be a lot of people misdiagnosed and suffering terribly.

[Robert L]

I did try the oral for a month without food for an hour but I just swallowed it so don't know if sublingual absorption will help. i will try sublingual but will inject every two or three weeks as well.
Thanks for your support.*

[Patrick Winter]

Originally Posted by Robert L

I did try the oral for a month without food for an hour but I just swallowed it so don't know if sublingual absorption will help. i will try sublingual but will inject every two or three weeks as well.
Thanks for your support.*

I believe there are studies out there that show sublingual is as effective (if not more) as injected B12 is. B12 is fortunately a very inexpensive supplement as well.

Take it first thing in the morning when you get up then have breakfast an hour later and it will be most effective. If you take it at night it may keep you awake.

[Neuroproblem]

Originally Posted by Robert L

I did try the oral for a month without food for an hour but I just swallowed it so don't know if sublingual absorption will help. i will try sublingual but will inject every two or three weeks as well.
Thanks for your support.*

it is kind of odd that your original gp still disputes it, since your new one says you have a deficiency, and a test proves it. Furthermore, you had relief of symptoms when you had b12 treatment. you should continue with b12 supplements.