For months I’ve been having increasing symptoms of nerve problems in my legs. Numbness, tingling, a feeling of weakness, etc.
I saw my GP and he tested me for B12 deficiency. I’ve had digestive issues for years so a deficiency was a real possibility. When he got the results he said that it was low normal and he doubted that was the problem. He took a second blood sample and sent me to see a neurologist.
The neurologist did an EMG (Electromyography - Wikipedia). The results were consistent with demyelination, meaning that the insulation on my nerves is being damaged. :eek:
I went back to my GP for a followup and he said that the new blood tests still showed low normal B12 but that the other things he tested weren’t really consistent with a B12 deficiency and he doubted that that was the cause. Even so, since B12 is cheap and there’s no downside to taking it, he started me on once a week injections.
I had a followup with the neurologist today and his interpretation was different. He said that, while the second test showed my B12 was again in the low end of the normal range, it was much lower than the previous test. He also said that there’s some controversy over what really should be considered a normal level.
He feels that my symptoms, my blood tests, and the specific type of digestive problem I’ve had for decades, are all consistent with the problem being caused by a B12 deficiency and that the injections will probably reverse the problems by spring.
I don’t think its’ pernicious anemia. According to Wikipedia, to meet the correct definition of pernicious anemia it would have to involve atrophic gastritis, which I don’t have (at least I hope not).
Thanks. It was scary. Nobody actually told me I might end up paralyzed but those thoughts do go through your head when someone tells you that the insulation on your electrical system is breaking down! :eek:
Interesting. I have a diagnosis of pernicious anemia by one endocrinologist, but my primary care doctor doesn’t seem particularly worried about it, other than keeping an eye on it during my biyearly visits. I take B-12 pills to counteract it. No mention of Atrophic Gastritis; the endocrinologist who diagnosed me with Type 1 Diabetes was the one who mentioned that I also had a B-12 deficiency that she called pernicious anemia, but her reasoning was that it was an autoimmune disease possibly related to diabetes.
I don’t have any symptoms, other than thinking that my feet were falling asleep a lot before I started taking the B12 vitamins. My primary care doc told me that was probably not related, but who knows? At the time I was reeling over the diabetes diagnosis so really didn’t spend a lot of time worrying about the B12.
This thread makes me realize it’s possibly more serious than I give it credit for. Thanks, I’m going to keep a closer eye on it from now on.
Please don’t make any medical decisions based on anything I post. For all you (or I) know I’m completely misunderstanding the doctors.
Also don’t take Wikipedia as absolute gospel.
You take pills for it? The funny thing is, after the first B12 blood test I started taking high dose over the counter B12 supplements on my own. Even so, my second blood test showed even lower B12 levels. I’m guessing that means that I have difficulty absorbing any oral B12.
You’re fortunate if pills work for you. You don’t have to stick yourself with a needle twice a week. Although if you have diabetes I suppose you may be sticking yourself anyway.
No worries, I do what the docs tell me, not all you crazy people on the Dope
The first endo told me I’d need monthly shots of B12 to deal with it, but my primary care doc said he had good luck with people using pills. So far, he’s been happy with the results from vitamins. My big thing is that I forget to take them. All this thread has done is made me try harder to remember them every day!
Do you do the injections yourself? I was told I’d have to come in for them if it came down to that. B-12 is an intramuscular shot I think - WAY more of a shot that insulin. (I’ve more or less convinced myself that insulin shots aren’t really shots, as they only go a few millimeters under the skin and the needles are very, very thin. Regardless, I have a pump, so no more shots for me! Yay!)
Yes, I do my own shots. I’m pushing a crapload of liquid into my arm! It somehow seems like it shouldn’t all fit. :eek:
I’m familiar with injection under the skin with insulin syringes. I’ve had to take a different medication (not insulin) that way, so my doc just figured I’d be able to do my own B12 shots.
I already knew how to fill a syringe from a vial and his nurse gave me the first B12 shot in the office and showed me where to stick it in the muscle. I just have to alternate arms.
It would be a real pain for me to go to the doctors office every week. I don’t know how I’d fit it into my work schedule.
My GP did another more sensitive blood test since there was still some lingering doubt. He called me today and said that I definitely have low levels and that I definitely need the B12 shots.
That’s good news since we now have a definite explanation for the nerve damage and it’s reversible and treatable easily with no side effects.
For some reason I thought the b12 shots were intramuscular. I have no problem giving myself shots under the skin, but intramuscular squicks me out (I don’t know why.)
I used to get the shots, I don’t absorb b12 well and the pills didn’t seem to help. Then I started taking 5 Hour energy and I *seem *to be able to get enough b12 from it. (We do test me at least twice a year, so the word seem isn’t really correct.)
If I were you I wouldn’t depend on some energy drink to get my B12. According to Wikipedia 5 Hour energy only contains 500 µg of B12.
If your gut isn’t absorbing it well then you’re only absorbing a fraction of that. I have to take twice that, 1000 µg, injected intramuscularly to get enough.
Sorry for being obscure - when I said we test me twice a year, what I meant was, my doc does a blood test twice a year. (well, at least twice.) We check my b12, my potassium, my magnesium, my calcium levels and no doubt a boat load of others. But those are the ones I have to supplement, so I know she checks those.
Since she is content with the results each time, I’m going to be too…
The 5 hour energy daily is a little more expensive than a shot once a month used to be - but I don’t have to drive out to her office to get the shot, and that is a good trade-off. My doc says to do what works for me.
Actually, what she said was: Your tests are now normal, I can’t justify prescribing the shots for you.
You should always do what your doc says. In my opinion (and I am not an expert, just a lay person), I think it’s a good idea for everyone to get and keep a copy of bloodwork results when you have it done. I did recently and it’s not all that difficult to read. On mine the normal ranges are shown as compared to my actual and anything not in the normal range is specifically highlighted. I like it better than just having the doc say “everything is ok”… I can see where I stand and where it changes the next time.
To add to what luv2draw said, my B12 levels were consistently in the “normal” range, albeit low normal. I think it was mainly because of the symptoms, and the opinion of the neurologist, that he started me on the B12.
As it turns out the “normal” readings were in my case a false negative and it took a different and more sensitive test to determine that.
So it’s important to try to dig a little deeper or even get a second opinion if you’re not satisfied with what you’re being told. Don’t be a hypochondriac or try to diagnose yourself over the internet, just question things like borderline test results.
I was fortunate that my GP, in spite of his skepticism, pursued this beyond the original test results. He tried to falsify his own opinion and ended up doing so.
