Forum

B12

New diagnosis and before diagnosis
#1

I haven’t been diagnosed, but my GP has put me on a course of B12 injections. Three times a week for two weeks, then one every three months.

I have been told that the symptoms will likely come back well before the three months is up.

To be honest, I am four injections in and feel no different yet.

I constantly feel sick and my limbs feel so heavy.

At night I lie awake with such weird sensations in my arms and legs from buzzing (almost vibrating) to stabbing pains. Muscles twitch on and off.

I am also experiencing more episodes of ‘the volume switch being turned down and a sharp ringing in the head’.

I have also become very ‘sweaty’ which I have never experienced before.

Fatigue is a MASSIVE issue too.

Feel I am going out of my mind - I have become emotional - could that be a bit of depression?

Any advice would be gratefully received xxx

#2

MS doesn’t cause low B12 but low B12 can cause MS-like symptoms.

Also you can have both at the same time. I do! (I have pernicious anaemia and RRMS. Lucky me!)

Different people react differently to B12. My brother (who also has PA) gets an instant boost of energy but I don’t - before my 3 monthly injection is due I get a gradual reduction in energy with a gradual (but still real) improvement afterwards. You still haven’t finished your initial loading of the vitamin where they are trying to get your levels up to a normal range so give it a bit more time.

Are you waiting for a neurology appointment as well or has your GP just recognised that your B12 is low? It is a good sign - I think - that your GP has thought of B12 because, a lot of the time, it is missed. (B12 does not form part of a standard “Full” Blood Test and has to be requested specifically)

If you are worried about your health it is not surprising that you feel anxious or stressed and this can come out in high levels of emotion. Not knowing is often the worst thing of all. Lots of people on here - diagnosed or not - swear by Mindfullness Meditation as a great way of clearing the negative stuff buzzing in your mind. There is a lot of information about Mindfullness on line if you want to find out more.

#3

I have had an MRI scan on my spine, that is awaiting results. I am awaiting an appointment with a neurosurgeon for further tests.

The interim blood test showed something in the blood that my GP has decided to treat with B12 while we are waiting further tests.

I became aware that something was not right about four months ago when the minor tingle in my right side (which has been happening on and off for years) became so intense that it physically paralysed my arm and leg completely for 12 days.

I was given so many drugs over those weeks that I have very little memory of what actually happened - all I know is that it was sudden and felt like my lower right leg from the knee wanted to explode!!

I always feel aware of my limbs now - day and night - I also feel like I have been drinking a lot of the time with slurring and unsteadiness even though I haven’t touched a single drop. I am also clumsy. I drop things, knock myself as I don’t realise how close I am to something. I am also now very forgetful and use the wrong word or cannot say what I want to say.

I am currently being prescribed gabapentin along with a miriad of other things to try and ease the symptoms.

I am frustrated with my own body if that makes any sense.