I thought it was to good to be true!

[Alfabeta]

Hi All

I have just had two periods with the majority of my symptoms absent. My recurring symptoms (after a whole range of symptoms ceased over two years ago) - by periods I mean between injections- out of the blue I become semi conscious then gradually recover taking about 10 seconds and left in a state of mild shock, a bit shaky and a little physically imbalanced. Usually, the symptoms would occur mid period between injections and last for around a week with up 10 events on the first day diminishing to one or two events at the end of the cycle.

In the last two periods The only symptom I’ve had is small fibre neuropathy (tingling all over my body - this symptom began about 12 months ago and has steadily become from rare to quite regular.

I had me injection yesterday and last night, in my sleep, I had 5 of the previous events and this morning I’m a bit shaky and feel like I am going to have more events.

I do not have PA (yet) but damage to my myelin sheath and I thought given that many symptoms have come and gone and not reappeared that the past months absence of the recurring symptoms meant that I was almost over the hill so to speak and, finally, after four years, getting better.

Is this a false hope and the recurrence after a lull common or am I really getting better and this is just a minor set back?

[pvanderaa]

These sound like mild seizures. What has your GP said about these periods?

[Alfabeta in reply to pvanderaa]

Mild seizures sounds dodgy! Talk to my doctor? Impossible- mention b12 and everyone in my practice look away as if a rudeness has occurred.

So far today I’ve been okay but a little unsteady and feel the likelihood of another event.

Purely conjecture but I was wondering if it was not a simple reaction to the b12 injection with my nervous system simply reacting to a massive influx of b12. I have noticed in the past that along with the mid term return of symptoms, I sometimes had symptoms soon after injections.

Thank you for taking the time to respond I find your responses generally to be highly informed, unprejudiced and very helpful.

I hope you have a nice weekend.

[pvanderaa in reply to Alfabeta]

You’ve probably also read that I’m always encouraging the use of a logbook. If the same symptoms repeat within a few days after the B12 jab, then these are the body using the B12 and producing byproducts which have to get sorted.

Although I’m not medically trained, my experience is that these symptoms are stronger or more severe when I was more deficient before the jab.

These symptoms are counterintuitive because you would think you need to lessen the B12 when really you should increase it to not get back to being deficient before the jab.

I've also had episodes of light headedness and thumping in my ears when my folic acid is out of balance with my B12. By that I mean I’ve taken too much folic acid and not enough B12. I currently supplement with B12 sublinguals with the folic acid.

The third thing is blood pressure. What is your blood pressure like in general. My wife bought an electronic home blood pressure machine to check her blood pressure daily and I use it as well and am fairly consistently low. I can get dizzy or light headed on hot days if I overheat.

Last idea is blood sugar. Do you know yours? Any diabetes in your family? I stopped all sugar after my father passed away from complications from diabetes.

Hope you get this sorted as it must be scary for you and worry and stress just consume B12.

[Alfabeta in reply to pvanderaa]

Thank you for responding.

I get my blood pressure tested before every injection it was 120/40 which just out of the normal but the nurse seems happy with it.

I’m a very good vegetarian (hence the b12 deficiency coupled with my doctor putting me on omaprezole on repeat prescription for around 6 years) I haven’t check my folic acid but I doubt if there’s a problem as I have salad every day. I also take a multi vitamin daily.

I had a sister with diabetes 1 but I have no symptoms of the disease and I never add sugar to anything nor do I eat puddings etc. I’m trying to diet at the moment so biscuits etc are banned from the house.

Alcohol is a weakness and doesn’t help my condition- around 30 units a week but I am cutting down.

Although I own a car, I never use it and walk about at 3 to 6 miles daily.

[pvanderaa in reply to Alfabeta]

I found alcohol and heat don’t go well together for me. Passed completely out after only two drinks one time walking home from the pub in high temperatures. After being diagnosed with B12D, I’ve stopped alcohol altogether and never looked back. Alcohol messes with the other B vitamins and may be neutralizing your daily multivitamin.

How about gluten and dairy? These contributed to my B12 deficiency. Didn’t figure that out until after neurological damage had occurred. Can’t handle either now.

[Elijahhawk in reply to Alfabeta]

If your blood pressure was truly 120/40, that would usually be considered low blood pressure even though the systolic number was normal. If you had a below normal systolic number and normal diastolic, that too would be considered low blood pressure.

B12 deficiency can affect your autonomic system which can have an adverse affect on your blood pressure for some causing orthostatic hypotension. Or b12/folic acid deficiency anemia can lead to general hypotension.

Is what your experiencing due to a lack of b12? I don't know. If your diastolic reading was a one time thing, usually wouldn't be cause for concern. But with the symptoms you're experiencing there may be a correlation.

If it were me, I'd call the doctor's office back and ask about that reading and if your diastolic number could be causing your symptoms.

It could be lack of b12. Could be you just need a lot more fluids to increase blood volume. Could be something else.

[Alfabeta in reply to Elijahhawk]

Thank you for your advice. I looked up the figures on the nhs chart it read just above the normal range and the nurse said she was very happy with it hence I assume the doctor would say the same!