Neurologist appointment wasn't too bad yesterday but still need help

The neurologist was nice: gentle, calm and listened to me, even though I was not at my best and ranted on a bit. Hard to get through 2 1/2 years of stuff, after waiting for 5/6 months (which I understand is quite good for neurology), without getting a bit angry or upset, and the appointment goes so fast. I was given a generous amount of time.

Think I had all the general tests: reflexes, checking awareness of vibration, walking, standing with eyes shut etc. All fine, as I expected. I'm lucky in that sense: have never had problems with gait/ dropping objects/ balance- just tingling, a bit of vertigo, hot soles.

More worried about cognitive problems, personality changes, isolation, sensory overload, mood swings, anger etc : he said he will put me down for a brain scan but not spine (he did know about SACD) which I'm okay with. He also said he didn't think I had dementia which I'm also okay with ! He did look at my symptoms but only really those relating to his field: fair enough.

He looked at my diagnosis from St Thomas': he wasn't on truly comfortable ground with Functional B12 deficiency, but was confident enough to admit to that, and he said that this would be haematologist's area in any case not his. Also fair and I'm seeing her again soon.

He listened to what I had to say about what I felt like, what B12 treatment I had had, what else I had been checked/ tested for etc.

He suggested that I had some headache syndrome (?? -can't remember exactly) -although I have never had headaches, he said it is possible to have this without headaches..... this is where I started to feel that it was all going wrong... he said that it could be another Vitamin B deficiency: niacin and something about co-enzymes (?? - again, not really sure). When I disagreed, he said that he had to respond to my GP (who he said had written a lengthy letter- haven't seen it myself) and this was a possibility.

I did tell him I felt that I had, in 2 1/2 years, gone along with whatever GPs and various consultants had decided for me, each taking one symptom and making treatment decisions based on that only: that no-one was looking at the whole picture or accepting the possibility that any of these problems could be B12 symptoms. That I had had a diagnosis of Functional B12 deficiency, and that the only people who seemed to understand and be aware of this condition were people on this forum who had to find their own way of living with it. I said that I had yet to hear of anyone with neurological symptoms who had been treated according to the haematologist's own guidelines (ie one injection every other day until no further improvement- which should be a decision made between patient and GP since all symptoms are not visible or present every day). He did say that neurological improvements should generally start within a week or two of treatment, and that was probably why he was looking for alternative reasons for my symptoms. I told him that I had accepted that with Functional B12 deficiency, there was not going to be that sort of improvement, but that each time I was put onto 'maintenance' doses, I went downhill. He said that he thought I had put forward a legitimate case but that ultimately, this would be the haematologist's decision. He also said that he would put me down for electronic impulse tests. I now don't expect to see him again unless something shows up in the testing (MRI or nerve). He took a lot of notes so now awaiting copy of letter to GP, and next appointment. Did point out that my job will not be held indefinitely. Went home and slept for 2 or 3 hours.

He told me haematology blood test results:

COELIAC: negative

Intrinsic Factor Antibody: negative

Active B12: >128pmol/L (normal)

Anyone out there who can shed light on niacin deficiency/ headache syndrome ?

Also hope this helps anyone waiting for an appointment. I had other paperwork with me 'on standby' but felt he was very reasonable.

9 Replies

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  • Hi..glad to hear that the appointment went well, it is nice to meet someone reasonable.

    Niacin is another name for vit B3, I ve never heard it referred to as headache syndrome. The symptoms are rash, mouth tongue and gastric mainly along with fatigue and headaches.

    Many people think that when we supplement / have B12 injections we should also look at the other B vits and that they need to be taken as a complex.

    How did he come to the conclusion that you were deficient, did he do blood tests or make that diagnosis from the symptoms?

  • I think it was more of a suggestion, since I was not responding well to 'maintenance' dose of 1 a month, and did not make a recovery after months of 2-a-wek injections..... or perhaps it was some reaction to something in my GP's "long letter" to him, which I haven't seen. No blood tests just the results on screen from Haematologist's blood tests as above.

  • Hi Cherylclaire I'm glad it didn't go too badly, at least treated you nicely. But wouldn't it be wonderful if they knew about B12 and didn't think it was everything and anything but that.

  • ...Especially when St Thomas' have given me a diagnosis already of Functional B12 Deficiency. I thought that Guy's and St Thomas' were working as one trust.

    Hoped we were going to move straight on to finding a cause. And even perhaps a treatment that works !

    Functional B12 Deficiency...seems that they REALLY don't want it to be that. Could be because there is no official guideline at all for long-term treatment and they are scared of killing me: addiction? overdose?? drowning???

  • "Let us treat for anything and everything" except B12 deficiency, even when it stares them in the face !

    And Cherylclaire if there were guidelines they would find some excuse for not following them.

  • Personally feel a bit disappointed that he's trotting out B12/functional B12 deficiency being a haematologists area- bit like being a jobs worth really nut such is ignorance of B12 and how it works - each specialism should at least be aware of the impact of B12 deficiency on their area ... and most of the stuff on treating functional B12 deficiency that I have come across has actually come from neurologists rather than haematologists -... rant over (possibly).

    It ispossible to get silent migraines - no pain but can impact on vision, balance, cognitive ability ... and not sure if there is some cross over with cluster headaches but not consciously come across B3 though this article does mention studies into its effect in potentially treating migraines

    umm.edu/health/medical/altm...

  • .........and hair loss, bleeding gums, daily diarrhoea, mood swings, limb tingling with tinnitus, yawning/ air-gulping, sore hot soles to feet, sore hot tongue, weak arms and legs, sore split mouth and exhaustion ? Probably my age: I'm 59 now !

    I will read it, but in a very disheartened way. I can't see a reason for this to be B3 after having been already diagnosed with first B12 deficiency, then Functional B12 deficiency. Makes me seem a bit greedy, wouldn't you say?

  • Hi Cherylclaire. Well...I'm entirely with Gambit62 on this one 😖. Very disappointing. I think I'll say no more lest I subject you to a very long rant!

    Sounds like he's plucking diagnoses from thin air rather than going on what's already known...you have a diagnosed functional deficiency and are not receiving the only treatment that has currently been identified as having some effect. So essentially, he's sent you back to a haematologist who has already refused to prescribe the only currently know treatment (recommended following research by two emminant Neuro scientists). And oh dear...I think I'm breaking out into a rant...sorry.

    Hope he at least tested your B3 levels and will,inform you of the results accordingly?

    Fingers crossed for the up and coming haemotologist appointment...hope its not the one you saw last time!

    Grief...what on earth do we deficients have to do to get appropriate treatment...

    Let us know how it goes 👍 X

  • Serious question: Do you know of anyone who has been diagnosed as having Functional B12 deficiency, and is getting adequate treatment for their condition ?

    [ Aside from those treating themselves, I mean.]

    The neurologist B3/headache thing? No tests carried out. Guessing, I'm guessing. At least I'm getting a brain scan and electric nerve tests, which is good news.

    The haematologist thing? Turns out she is the B12 expert I've been waiting for, so yes, I do want to see her again. She said to write down any questions I have and she will answer them next time. I think she meant it. Can't do this all over again with someone else: there isn't anybody else.

    This is end-of-the-road : the GP will act on the B12 expert's recommendations, and I will be stuck with that. All the results (IF: negative and Active B12 : normal) are not helping my case.

    Yet here I am, failing miserably to maintain on a 'maintenance' level of 1 injection a month- one that most people would envy, I expect.

    Here's something that might sound familiar to you:

    Yesterday, 16 days after my last B12 injection, I had that tingling, iron-filings-on-the-move feeling, that awful draining feeling that accompanies the maddening white noise. It always somehow feels like the last dregs. Checked my diary: exactly the same thing happened 16 days after the injection before. Pattern forming? Too early to say maybe.

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