Numbness not getting better

[onesneakymofo]

Hello,

About 5 months ago, I came to my primary with some tingles / numbness that kept popping up in my hands and feet. My primary checked my blood levels which was super low. She decided to give me B12 supplments (1000mcg) and I have been taken them since. At the same time, I decided to do a follow up and schedule with a neurologist to rule out anything else it could be. He prescribed me gabapentin to help with the numbness / pins and needles / tingles.

Well, I noticed that my body started having some weird side effects when I started taking gabapentin like twitching and red splotches on my skin I decided to stop taking it. When I did this, I noticed that my numbness had gotten worse since I was diagnosed.

I went back to my primary a couple of weeks ago since I was having something else going on and decided to ask the doctor for self-inection shots and to get re-tested for B12. The nurse called me back when my tests were in and said that my levels were good (I never got a number).

My numbness is consistent and in patches - it's on the left side of my left wrist and my left thumb, on the upper part of my left shoulder, the left side of my neck, and my cheek, and my right leg.

I am still following up with my neurologist to rule out any other things it could be, but the testing and rescheduling is somewhat slow.

My question is will the numbness start to go away or is there another issue going on?

[clivealive Forum Support]

Hi onesneakymofo are you in the U.K.?

When you were "diagnosed with low B12 almost 5 months ago" were you given or told to take some form of Vitamin B12?

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

It is also important that your Folate level is monitored as this is essential to process any B12 supplements you (maybe) are taking.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

When you got "re-tested, and the nurse called me back when my tests were in and said that my levels were good" had you been taking any B12 supplements?

If you have been taking B12 supplements it is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[onesneakymofo in reply to clivealive]

Hey clivealive, to answer your questions:

are you in the U.K.?

No, I am not.

had you been taking any B12 supplements?

Yes, I have updated my post to reflect that along with some more details.

Thanks for the detailed reply. Is folate something that is checked in blood work, or do you specifically have to ask for it?

Thanks.

[clivealive Forum Support in reply to onesneakymofo]

Here in the U.K. testing Folate is not automatically included in a full blood test - I obviously do not know about where you live, so please ask,

Any serum B12 test results taken after supplementation are going to be skewed.

[fbirder]

You need to see a neurologist.

The patchy numbness you describe isn’t what you normally get with B12-related peripheral neuropathy. So there’s a fair chance that your problem is caused by something else.

[onesneakymofo in reply to fbirder]

Thanks fbirder. I agree with you, but I decided to reach out to a B12 community just to check and make sure to ease my mind. I'm hoping it's just B12, but there's a big chance that it's not.

[wedgewood]

So after being low on B12 , were you given B12 injections /tablets , or only given gabapentin ? You don’t mention . Also , always, always ask for a print -out of your blood test results .

[onesneakymofo in reply to wedgewood]

Yes, wedgewood. I have updated my post to reflect this information. I'll check with my primary to get a copy of my blood tests - thanks!