Letter from Neurologist, Haematologist appointment Weds: advice please

The letter to my GP ended like this:

"...her chronic neurological symptoms such as problems with memory, poor concentration, changes in mood and fatigue are well described in vitamin B12 deficiency though are relatively non-specific (for example they are also seen in primary headache syndromes such as chronic 'silent' migraine or chronic fatigue syndrome) .." although I showed him the diagnosis of Functional B12 Deficiency from St Thomas'.

However, he HAS requested an MRI of the brain to rule out a structural cause, and nerve conduction tests.

He suggested "some other medication could be trialled such as riboflavin or co-enzyme Q10 as these can be effective in chronic headache syndromes (and are thought to improve neuronal energy metabolism more generally) it is thus feasible they may improve some of her chronic neurological symptoms" .

Please help.

I don't have headaches and have never complained of them. When I said this, he said that you can have this chronic headache syndrome without headaches. By this reckoning, It may be a long, long time (and continuous re-diagnoses, and treatments for conditions for which I don't have any symptoms that aren't "silent" !) before I get symptoms that are recognisable to the experts as belonging to B12... and it may well be that these ones are by that point irreversible.

I have a 2nd appointment with the haematologist on Wednesday - any advice on what to ask for or how to put an end to this guesswork ?

14 Replies

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  • My only thoughts are a polite "what an idiot" or ". . . . . . "

  • beginner1 , this is how I know I'm not as bad as I was in some ways: I'm not crying , I'm looking for the right words for Wednesday.

    This is how I know that in other ways I'm getting worse: due to big increase in regularity, have now added these 2 symptoms to my chart :

    bleeding gums (not while brushing)

    yawning (air-grabbing)

  • Cherylclaire yes crying is my benchmark. I never cry normally.

  • Hi

    What has happened since this post to make your GP shift????

    (The good news is this: my MMA blood results came back as high, confirming B12 deficiency - despite B12 blood test, taken at the same time, reading over 2000. My Dr. has had me on 2nd lot of loading injections (6 over 2 weeks) while waiting for results, which will now be continued until no further improvements then 1 EVERY MONTH! She also noticed visible improvement, does not need to see me again and will let me decide when to stop loading and start monthly injections- as you can imagine, this delighted me and my partner, ....and my doctor! Improvements did not even start until after the 5th injection (of 6) so don't get disheartened.)

    You have B12 deficiency and if they had put their effort into checking to see if you had PA it could all be sorted A a aa aaargh!!!

    I am lost for words, have you seen the latest clinical paper you might want to 'ass this on to your consultant.

    I think I need a stiff drink with my B12 injection😨

    Mark

  • holehead , that seems a long time ago now. GP was doing the right thing. Think GP got scared: diagnosis of Functional B12 deficiency a new one for her, probably she did not realise that even with the reloading, expected miracle recovery would not happen- so then had 2 a week for months -and again, started to get worse, decline just slower and less dramatic. I'm sure that by this point, she was being guided by a haematologist, probably the one I am now seeing.

    Not sure anyone knows what to do with me now, beyond trying to make the original diagnosis go away by replacing it with something that is less of a fit.

    The latest clinical paper???

    Probably written by the haematologist I'm seeing (again) on Wednesday.

  • Cherylclaire...here's a link to the paper mentioned by holehead

    bloodjournal.org/content/bl...

    Written by a Haematologist and Published in Blood Journal.

    See page 5, table of causes of B12 deficiency, section 3a and 3b, severe B12 deficiency - caused by errors in B12 metabolism (functional deficiency) as follows:

    a. Impaired ability to transport B12 (TC deficiency)

    b. Impaired ability to process B12 (8 distinct inborn errors of cobalamin metabolism resulting in homocystinuria and/or methylmalonic acidemia) with varying clinical spectra involving the nervous system and blood

    In other words - functional Deficiency! Perhaps your haematologist would be interested in this - especially in light of your high serum B12 / MMA levels when diagnosed with functional B12 deficency. Might disabuse her of the mistaken notion that you can't have a B12 deficency because your serum B12 levels are 'normal'.

    Paper also states (last page, can't remember page number 😖)

    Concerning treatment of confirmed B12 deficiency, well-defined guidelines have been enunciated, the details of which still apply.

    (These are the well defined guidelines that your haematologist is not following (the every other day until,no further improvement for neurological,symptoms)

    And again, on the last page:

    It should be noted that patients with pernicious anemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with, B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice.

    Whilst the papers author makes the above statement in relation to pernicious anaemia, I would argue that since the treatment of pernicious anaemia is the treatment of the B12 deficiency it causes, then it's also applicable to cases of B12 deficency where confirmed PA may not be the cause (just in case your haematologist states that you don't have PA).

    So, based on the above (and your proven history) no reason for your haematologist to refuse or deny treatment with B12 injections at a frequency that is:

    a) already recommended in all current guidelines...and

    B) of sufficiency frequency for your individual needs (i.e. enough to keep symptoms at bay, enable effective neurological repair...and make/keep you well.

    👍

  • Foggyme , between you and holehead , I have now got the document and the questions I need to go tomorrow with a good chance of a positive outcome ! I can't thank you enough for that.

    You have also reminded me that a negative outcome can also be seen as a positive; the freedom to regulate and administer own treatment as I see fit and without having to beg for vitamins like a dog ? Sounds okay as an alternative outcome to me.

  • 👍 good luck x

  • WOW holehead You have lucked out.

  • Hi Cherylclaire. Hmm...

    There is no guesswork...just a neurologist and haematologist who don't understand B12 functional deficiency... you already have tests to 'prove' you have this.

    Ask the haematologist the three questions I left in my previous reply to one of your posts...the quite blunt ones about her not following the British Committee for Standards in Haematology treatment guidelines...and ignoring the research by of one of the top clinical neuroscientists in the country re: treatment of functional B12 deficiency.

    I'd go with the questions written out - ask them to be put in your medical records.

    Also ask that if she refuses to treat you, please can she put that in writing and include medical evidence to support that decision (there isnt any) and confirm to you in writing that you are not at risk of developing subacute degeneration of the spinal cord due to inappropriate treatment of functional B12 deficiency (not suggestion you have this but should make her stop and think).

    You know that B12 injections are effective (as per before your injections were reduced) so if you can't get treatment prescribed you don't have to go without the frequent injections you obviously need.

    Blunt, I know...but think you've reached that point. And sometimes the thought of personal and professional accountability is the only thing that rattles these people into action. Unfortunately.

    You can top up surgery jabs by self-injecting B12. If you lived in many places in Europe you could buy injectable B12 from a pharmacy and inject as often as you needed to get and keep well. So help here with that, if needed.

    Many here have been forced to take control of their own treatment, as a last resort...and all who do that have no regrets (myself included).

    Good luck on Wednesday. Let us know how you get on 👍

    P.s. Have added details of research paper to one of your replies above.

    Also - agree with Gambit about the silent migraine - but do point out to the haematologist that when you were having alternate day injections this did relieve your symptoms - which got considerable worse (and are still worsening) since you injections were stretched out to monthly - indicative that under treatment of B12 deficency is indeed the problem 😖

  • think I have said this before but silent migraines are real and can be very debilitating. At their worst they are associated with short term neurological problems such as aphasia, muscle weakness and balance problems. Generally they are associated with visual disturbances.

    So not necessarily the madness that you might think.

    However, if the symptoms are relieved by a B12 shot that would seem to suggest that the problem is B12 deficiency rather than silent migraines/chronic headache

  • Thanks, Gambit, not saying it's impossible:

    No doubt it is a serious condition, but my worry is that neurologist has shoehorned a few selected symptoms to fit his suggestion, since by his own admission, he does not know much about B12 and thinks I have a good case, but should present it to the haematologist in charge of my treatment.

    I don't think I've got it. No visual disturbances, no balance problems etc, and nothing short-term to report. Quite the opposite in fact: the splits, sore red skin and bleeding at the corners of my mouth were a fairly constant thing and date back about 10 years......but who goes to the GP with a split mouth? (Still comes and goes according to B12 treatment.)

    Still not sure about Riboflavin and Co-enzyme Q10: looks like I'm going to be in the library a while today !

  • Tell him you feel run down and want b12 shots . What we had to do. Then he has to give you a solid reason not to prescribe them.

  • Wljs -looks like you were lucky then.

    None of the haematologists (the locum who told off my GP by letter, the 1st one I saw, or the 2nd one I've seen) will give me more that the 1 a month I am now on, even though I have made it very clear that I am getting worse since put on "maintenance" level, my partner and my MMA results backing me all the way. Clinging on now for MRI brain scan date and blood test results for genetic mutations (which will take months).

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