Pernicious Anaemia Society

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Neurologist appointment

I had a phone call in the week to book me in for an appointment to see a neurologist on Sunday afternoon (yesterday)

This is what he said:

The nerve damage I am left with is unlikely to get any better as it's nearly 2 years since beginning treatment and that the frequency of injections wouldn't make any difference.

I should do what I can and rest when I'm tired. At 69 I should expect age related problems to start to show up so not everything will be only down to the b12 deficiency. I said I don't want to and I am unable to rest just because I get tired so much and that having b12 injections once a week works best for me, that after 2 weeks I get noticeably worse so the frequency really does make a difference. He said that I will have to take that up with my GP.

The crawling feeling I get on one side of my face is a migraine symptom, I do get a tightness around my head and it affects my eye. I used to get migraines which usually started with an aurra when I was younger which I put down to hormones. He said these are classic migraine symptoms but without the headache and not caused by b12 deficiency.

On the same side I also sometimes get little electric shock type pain, intense but lasting only seconds. This again he said is not a b12 deficiency symptom but the trigeminal nerve and he is arranging an MRI to see what may be causing inflammation of this nerve.

Does anyone relate to these other diagnosis?

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Vitamin B12

30 Replies

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Hi Showgem was this a virtual appointment or face to face? I ask because my appointment has been cancelled but I was offered a zoom appointment instead.I’m reluctant to part with all that money on a non face to face as I can’t see how any consultant can properly assess neuro symtoms via zoom.

We’re you also examined during your consult?

I hope the mri gives you some answers I had trigmenial neuralgia on my left side of face they said at time caused by herpes virus,I had the worst ever outbreak of herpes on my top lip,after a visit to dentist funnily enough,giant water blisters, I looked like mick jaggers wee sister it was awful. I had pain in my gums up behind my ear and my eye and my head very debilitating .I was on meds for a long time can’t remember the name but do remember I didn’t like them,made me feel spaced out.

Good luck x

This was a NHS face to face appointment but there was no examination. He asked lots of questions but everything felt rushed. I had nerve conduction tests done a year or so ago and the GP had done tests earlier this year.

He thanked me for showing him my PAS checklist of initial symptoms (which was all of them except menstual problems as I’m past that age), I noted there had been a couple of further symptoms on top of these. I explained the symptoms that I still had although they had improved a lot.

I feel that it could have been done via video link.

Interestingly, although I’ve not had herpes, about 1 - 2 years ago I had a lot of trouble with my teeth on that side (RHS) I eventually had two of them out but one gave me so much trouble, the dentist said I have funny nerves, the injections wouldn’t stop the pain when she was trying to extract it. I had the same trouble with another tooth a few years ago.

Thank you for replying showgem very kind of you.Think you’ve hit the nail on the head with the tooth issue it could well be that that’s causing you the problems,I think once you’ve irritated those nerves it’s an ongoing problem,I still have problems nearly 30 years later I’m sorry to say.This was also that same area I had the head injury and of course when I get attacks now I can’t tell is it the trig or is it lasting effects of the head injury.

You were very well organised for that consult and as you say yours could have been done by video link if you’d known he wasn’t going to examine you,why would they put you at risk just now it’s silly.

I hope you can resolve things and best thing to do is keep up your injections regardless,I’m every 2nd day have been for about 9 months now and I’m starting to notice small changes but still would like to be tested neurologically so I’ll just need to wait I suppose.

Best of luck and thank you again.x

I hope it’s not too long before you’re able to see someone, hopefully things should get easier in a few months time.

Before I knew about my low b12 and PA I also had a couple of knocks on the head, mostly caused by my balance issues and had concussion the second time. No wonder our nerves have got upset!

Yes same here the p.a has a lot to answer for doesent it.many thanks again take care x

The comments around migraine do make sense - migraines can change as you go through life.There is an excellent set of podcasts from the National Migraine Centre - and one covers effects relating to trigeminal nerve.

nationalmigrainecentre.org....

The National Migraine Centre also sponsors a forum on HU

healthunlocked.com/migraine...

Great link Gambit62 I didn’t even know the place existed ,I know the neurologist I’m supposed to see is a professor who specialises in headachesI’ll have a good read through later very helpful thank you.

Thank you for these links, I will have a listen to some of the podcasts and look through the forum.

Yes very familiar I didnt have any of the symptoms you describe until until b12 deficiency!

Thanks for your reply, the links Gambit62 has given are very interesting, I’ll listen to the one he? mentions again when I have a quiet time to take it it properly.

Hi,

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Peripheral Neuropathy

nhs.uk/conditions/periphera...

Some of what you describe seems like paraesthesia, which means unusual sensations.

Insect crawling sensation (formication) , electric shock sensation, tingling, pins and needles are all types of paraesthesia and as far as I know can be associated with B12 deficiency.

I was left untreated for many years and got to the point of dementia type symptoms and spinal symptoms and I improved once I finally got adequate treatment...I had to resort to treating myself though.

I am not medically trained.

Will try to add more tomorrow if I remember....

Thank you. I do have peripheral neuropathy. It was the checklist you've given me the link for that I took to the appointment.

Like you I had gradually worsening symptoms for many years that were put down to my other health conditions. By the time a GP picked up on my PA I couldn't walk more than a few steps, shuffling from one hand hold to another for support. I too was convinced I had dementia, this was nearly 2 years ago and I was really going downhill quickly by that time.

The neurologist took on board all my symptoms, even ones not mentioned on the checklist, my hair had been greying for some time but went a yellowish white. 2 years on and some of my hair is growing darker and the yellow tone has gone! My feet were yellowish too and my nails were awful, weak and greyish. Friends have told me that they knew I was getting better when my skin went pink again instead of being grey.

He was so certain that the silent migraine symptoms and the trigeminal neuralgia weren't b12 related as I had thought that now I'm not sure what to think.

I am injecting every week as that seems to work best for me.

Thank you very much for your reply.

Well let him be certain. Insert big fat sigh. So frustrating. I had trigeminal neuralgia symptoms for years and it magically disappeared with my b12 injections. Trigeminal Neuralgia can go into remission but too much of a coincidence. All were diagnosed at the same time.

I’ve had the migraine symptoms before but the trigeminal neuralgia began after starting injections so may not be b12 deficiency related.

I hope you get some relief soon, Showgem.

Thanks 😊

I had trigeminal nerve symptoms for many years until a dentist suggested it was a tooth causing it . We decided to remove the tooth and I have never had the pain since, which was many years ago. Hope this helps.

I don’t understand the frequency comment. If the frequency doesn’t make any difference then how come the treatment is injections every other day until no further improvement?

I have problems with my arm and foot on rhs, if I have injections every other day it’s fine, more than that and it’s funny again. My first nerve symptoms appeared 6 years ago and the nerves have still ‘come back’ with enough b12.

The NHS won’t give every other day injections long term, they interpret it as initially. I’ve had to get my own supplies, I was injecting twice a week but recently once a week.My nerve damage was quite bad at the start of treatment two years ago and has never fully repaired. I’ve been told some nerves can take up to two years to repair but after that the nerve damage will be permanent. My GP has eventually agreed to supply the vials for fortnightly injections and will review it in 6 months but after that I should expect to be put on the usual injection regime of once every 2 - 3 months.

So I assume your nerves have repaired if you are symptom free with regular injections. Mine have never fully repaired and I’ve never been symptom free even with injections 2-3 times a week.

How long did you have every other day injections for? Maybe I'm being pedantic. On the one hand there is provision for every other day, on the other hand it seems like these are often stopped arbitrarily 'you have had enough now'. I suppose I just wonder whether there may have been more improvement if every other day had been given for two years.

I’m sure the nerve damage would have improved more if I had been given the correct treatment from the start. I had 3 injections a week for 2 weeks and was then given an appointment for 3 months later. After 2 months I was worse than ever except for the glossitis I had no improvement.

It was difficult as I felt like I was dying but I had found the PAS by then and insisted on injections 3 times a week, I was given these for another few weeks then told I now had to wait 2 months for my next injection. I had by now started to improve quite a lot but after a few weeks without injections my symptoms were worsening again so again I kicked up a fuss and showed the GP information from their own guidelines that I had found through the PAS and they agreed that I could have injections twice a week for 12 weeks. After that most of the nurses would refuse to give the injection because “I had now had more than the 12 injections and unless they had clearer clarification from the GP they weren’t allowed to as it wasn’t the way it was usually done, everyone else only had injections 2 - 3 monthly after the initial start up doses “

Another nurse kindly went in to see the GP, she then showed me how to self inject and the GP gave me 10 vials.

I purchased my own vials and equipment on advice from here and continued to inject twice a week. The GP prescribed the 10 vials every few months but insisted that I spaced injections out to get to 2-3 months. I haven’t told him I have my own supplies but for the last couple of months I’ve spaced injections out to weekly.

I feel that if my injections had not been so intermittent during the first year of treatment at least it would have given the nerve damage more chance of healing.

I wonder if there might still be benefit in every other day? Is that something you have considered? Or is there a reason why you are only doing weekly?

I don't understand the obsession with stopping something that is beneficial unless it is dangerous. If it is dangerous I would like to understand why or see evidence that it is such. Without any appreciation of the limitations of losing feeling in our limbs, many of us are forced to do something against recommendations because the other option is to gradually lose mobility, strength and feeling under the gaze of doctors who say there is 'nothing to be done'. And then we are treated like children for not accepting this.

It has taken 3 months of eod injections for my feeling to return (that's around 50 injections) and if I stop the eod injections it returns. This is 6 years after onset of nerve issues all whilst being told I am imagining it. On monthly or weekly injections, my fatigue was much improved but the numbness was still intermittent.

I know, I really don't understand why GPs are so against EOD injections continuing, if I asked for stronger painkillers or antidepressants they'd probably just dish them out!It's only recently that I decided on once a week as I feel no benefit from injecting more often, three times or twice or once a week I have the same remaining symptoms, it doesn't seem to change. If I go over a week I become really tired and my tremor starts up again so once a week seems to work.

I will think about injecting more often again though, just in case it helps.

Thank you for your concern, it's appreciated as family and friends don't really understand and I hate injecting so it's really difficult not to give in and stop trying and just to accept that this is way it is.

Yes, I understand. I've had 20 years of being told I am imagining my fatigue. I was repeatedly told by my doctor that the injections were a placebo, the clinic just wanted my money (I was gladly giving it to them in return for not falling asleep all the time!) with no explanation of what to do other than go away and accept it. Despite paying for tests, injections and still trying to explain to the doctor that I felt better, I was told this wasn't true. It's infuriating and I don't understand why (like you) I cannot as an adult be trusted to know my own body.

I was told by other members to try eod for at least a month to see if there were any improvements. I figured I had nothing to lose and could then at least stop in good faith, knowing I had tried. I hated injecting too, but it did get easier having done so many. It is mildly irritating now rather than making me shake with fear.

I do find it hard having to make medical decisions my own. On one hand I feel disobedient and worry I am doing something I shouldn't but if I do what my doctor says and stop I don't think I will cope.

thrones is right. Herpes can trigger all sorts. Your mri sca is pretty important.No idea what mri shows, insist on other investigation, if nothing showed...just forgot the names of othere tests. ct scan other tests.No idea, have you been tested for an ordinary stroke?Partisometimes thinking out of the box helps.al paralysis of your face can betriggered by latest dental treatment, inflammation...Depending on your consultant, I personally have appointments via phone, but zoom can reveal appearance, sometimes people think they are ok, heavily depressed, esp. when on painkillers and NOT working.I am not suggesting you are, but a pic can reveal more you can consider relevant.Sorrry to hear you are struggling, all b vits are great for any neurological problems esp b12 injections, keep an eye how many recommended dose, but as a supportive treatment it is good, correct number of injections and dose. speak to your gp, if good as mine, can discuss anything and WILL BE LISTENED TO.ditch time wasters so called gps if won't listen, argumentative, unhelpful.if in pain, asw nerves usually are, investigate all possible relief.I am ataxic, pain free, but once osteoarthritis sets in my thumb, will try all legal or not.ruthlessly.nobody understands a nerve pain had a trapped nerve and crawled on ceiling.,,,,,

Thank you for your kind reply.Maybe that’s why I was given a face to face appointment, I was conscious that he was watching me when I walked in and when I got up.

I think the Trigeminal nerve problem could well be related to my dental problems. I’ll have to wait for the MRI to see if there’s any findings but thank you for your advice.

docs are not any idiots, but I marvel they missed on your dental treatment esp. when face nerv problem.I go 2x a year to SIR SID WATKINS bld, top neuro specialists...for my ataxia, I suppose VERY LUCKY.My late hubby immediately said, keep hold of him knows what he is on about, my hubby studied microbiology, genetics at liverpool uni, so he had a clue...he had a constant argument with his old gp, a new one fantastic, mid 30s, listens to any patient of his, ope to suggestions, willing to listen, of course decides IN THE END, my hubby finaly met a gp wiling to listen.the old one arrogant, what does my hubby know, he knew more than him, ONLY wasn't a doctor of medicine, but knew re vit.minerals more than doc.he passed on 2019 cancer of bones age 80. I am much younger,, but we were a perfect match. I am not British born, only naturalised.so many friends of mine are living here 20 years and more only 1 is. How greatful I am, as eun national, wld be nothing NOW. He is gone, at least legally protected.

i amm NO doctor, but rarely any gp is capab le of ;lateral thinking.Haave it sorted, that's the main thing, to stay nerve pain free. All the best.Monikax

Hi again,

Articles about facial neuralgia and B12 deficiency

mdedge.com/neurology/articl...

omicsonline.org/open-access...

Maybe your neurologist and GPs might be interested in reading them?

Very interesting, thanks 🤔