Vitamins and neurology investigations

Hello,

I've been having various neurological symptoms since March this year: started with a sensation of weakness in right arm then burning feet, progressed to numbness in hands and feet. I get pins and needles a lot and tingling in my extremities, and lots of muscle twitching. I've also noticed an occasional tremor in my fingers. All these symptoms get worse in hot weather or after a bath, and are more pronounced when I'm lying in bed. Fortunately it was a hot day when I visited the hospital for a neuro consultation (after a long wait) so she got to see the tremor at its worst.

It all seems like possible MS stuff, as I get occasional eye pain and the tingling sensation is sometimes in my forehead too. My right knee can go numb for hours at a time.

I do have Hashis (previous posts relate to my self treating with NDT due to dismal management by my GP) and have a history of B12 deficiency, which was initially treated with injections but this was stopped in 2012 and never resumed. I tested negative for PA in 2017 but was using a B12 spray at the time. I also have very low iron and vitamin D and have been supplementing and eating iron rich foods to try and address this.

The neurologist said she expects a forthcoming MRI scan to come back clear, and she feels B12 isn't the problem.

I supplement with magnesium citrate, methyl folate, D3 with K2 (spray), methylated B12 sublingual tabs plus a whole load of other stuff like zinc and selenium. It costs a fortune!

So... my MRI is on 18th November. I'm absolutely convinced I have MS, but should the scan come back clear I'd hope they'll do extensive blood tests. Should I stay off B12 and others beforehand, and if yes, when do I stop? I've read that I should give up a week or so beforehand, but also that it should be more like 3 months. I've only just resumed taking supplements after a break of a month or two, and did use a B complex for a short time but gave it up as I was feeling jittery and wasn't sure whether the complex was causing it.

Incidentally, I went for some food allergy testing privately - some think it's useful, others don't - but it did suggest low vitamin D and iron (which I already know) as well as low B3 and B5.

I take 2 grains of Thai NDT daily, started it in May or June, and seem to be doing fine on it. The neuro wrote to my GP informing them of what we'd discussed and that I'm on NDT, which is fine by me.

Any advice would be greatly appreciated. Sorry for the long post. This is extremely worrying - I've never experienced neurological symptoms before and I don't know what to expect.

Sarah.

[SeasideSusie Remembering]

Littleisland

To get a baseline B12 level, to see what you are holding on to, you need to be off B12 for 4-5 months.

My first thought was a B12 problem, you say you have a history of B12 deficiency and that your injections were stopped. I thought once on them you stayed on them as testing when on them is pointless.

If I were you I'd be asking on the Pernicious Anaemia forum for comments because I think it's very strange that you were given B12 injections then had them taken away.

healthunlocked.com/pasoc

[Hidden in reply to SeasideSusie]

Thanks Susie.

I've posted on there before and was told that, because my most recent results (January?) showed my active B12 levels were above the upper limit - I'd been supplementing very heavily as prior to that they were low in range - I couldn't have PA.

The person who posted suggested that if I had PA then no amount of sublingual B12 would increase my levels, and that the only way I could do this would be via injection.

I can try again maybe...

[SeasideSusie Remembering in reply to Hidden]

I'm afraid I don't know anything about B12 deficiency and PA. You say you were originally given the B12 injections for B12 deficiency, then they were stopped. I don't know if this is something that happens when it's B12 deficiency. Perhaps you can ask on the PA forum if this is normal.

[Hidden in reply to SeasideSusie]

Thanks, I'll do that later. Thursdays are hectic unfortunately!

[Mama196 in reply to Hidden]

Interesting that this could be PA related. I’d never heard of it until last month when I found out my grandad suffered from it. Maybe that’s a link for me too, though I had b12 tested through Medichecks and was told it was in range though lower 30% of the range.

[Mama196 in reply to Mama196]

I also have the MTHFR gene mutation but I’m not really clear if/ how there’s a link with B12.

[SeasideSusie Remembering in reply to Mama196]

I take it that was Active B12 that Medichecks did? If your result was less than 70 (range 37.5-188 I think) then that suggests testing for B12 deficiency according to Viapath at St Thomas's Hospital. See

viapath.co.uk/our-tests/act...

[Mama196]

Hi, this is going to sound a bit random but I’ve had similar but not as bad problems and I’ve tried starting/ stopping eating nuts a few times and it seems to help when I stop. It cpujd ne random but I have a feeling it’s related. I am considering the autoimmune protocol elimination diet to see if it helps too.

[Hidden in reply to Mama196]

Hi, I've tried that and have a few books. It was before these symptoms started and it's very restrictive but I felt good and lost some weight too, always a bonus!

[Jaloz]

Hi there! I’ve experienced similar symptoms and I’m wondering if you ever got the bottom of it? Have your symptoms resolved?

[Hidden in reply to Jaloz]

Hello, I visited the Pernicious Anemia group and bought B12 and syringes. I'm halfway through loading doses (every other day) which apparently you should try until symptoms go away, then just maintenance injections maybe monthly.

My symptoms do seem to be slowly improving. The neurologist refused to accept it could be B12 related and instead said I have a 'functional nerve disorder'. Apparently that's just another way of saying it's all in my head 😡

If you want to PM me, I have a useful link which tells you more about possible B12 deficiency symptoms. My injections were stopped in 2012 because they were scared to give them me during pregnancy, then refused to resume them again afterwards. This is absolutely not what should have been done.

Unfortunately, as with thyroid, we often end up seeing help online and self treating...

[Jaloz in reply to Hidden]

Im so glad you’re seeing improvements! Yes I’d appreciate the information very much please!

[Hidden]

Head to b12deficiency.info and there's a list of symptoms. There are quite a few!

[Alejandrita17]

Hi littlwisland, how are you coping nowadays? I have some of your same issues, MS has been ruled out fortunately. So, I don't have a clue about what's happening. I blame it on the Thyroid.