I finally got an appointment with a neurologist last year, and had a CT and EEG (not related to the pernicious anaemia). I also had a load of blood taken. I still don't know what the neurologist has said about anything, as he doesn't seem to have given a report to my GP, not even to confirm that I have neuropathy in both feet and my hands *le sigh*.
The only information she had was that the blood test had shown my B12 was 151, and that I was low in vitamin D.
She seemed to think I was on B12 injections, which I'm not. So I've to get an injection every 3 months - which I don't think is often enough, but I've my follow up with the GP next week so I'll ask about more frequent injections then.
I took a vitamin D supplement for a month, and think I need more, the skin on my hands was dry and flakey, which cleared up when I was taking the vitamin D, but it's getting dry and flakey again.
Also my mother died about a year ago, and I inherited the house. So now I'm looking for a cleaning company that deals with hoarding - not that I'm a hoarder, I'm just too debilitated to clean and tidy and since I don't look sick...it's just easier to pretend I'm a hoarder *le sigh*.
I email rather than ring because of my tinnitus and my speech can get a bit 'funny' (slurring, forgetting what words to use etc), but no one returns my emails...
I can't stand speaking to people on the phone at all! The phone call I'd need to make about the house would be really long as well, so it's easier to just email people
It's true that there are other reasons for having repeatedly low B12 levels, but the one that would first spring to mind would be Pernicious Anaemia. If your GP does not think this is the case, you would expect a valid reason given (instead of laughter) and further blood tests while setting up a referral or two to see what could be the cause.
Blood tests that might have been done/ that you could request :
Intrinsic factor antibody test (IFab) -although can give false negatives 40-60% of the time BUT a positive result is 95% certain - so negatives do not rule out PA but positives are as good as it gets.
Methylmalonic Acid (MMA ) level test might be useful. MMA links to B12 in the conversion process, so high levels of MMA in the blood suggests insufficient B12 to link up to- as long as renal problems have been ruled out, which is also just a blood test. As you can probably tell, I'm not a scientist, but have had this particular test five times now. Used as a reliable second indicator if levels high enough (your serum B12 levels being primary indicator).
Neurology report should be chased up, and previous blood test results looked at, and gastroenterology would not be a waste of time- would be able to rule in/out Coeliac disease or small intestine bacterial overgrowth (SIBO) as well as checking for PA.
I think you have already demonstrated that you cannot absorb B12 from your food (extrinsic factor) assuming that you have a sufficiently B12-rich diet. If it is purely dietary, supplements can be taken orally.
You should have been given loading doses to boost your B12 levels immediately. If they dropped again, loading doses should have begun again, before B12 maintenance regime began- which I guess is what the 3-month wait is all about. But you have neurological symptoms, which is why they sent you to the neurologist (and why they should have chased up his report by now).
If you did not have neurological symptoms, the recommended treatment in the UK is loading injections and then maintenance injections every 2-3 months. If neurological symptoms are present, as in your case, loading dose of injection every other day until no more improvement can be had, review, then every 2-3 months. This is why the results from the neurologist are so important.
I 'm not sure, but I would expect same/ similar guidelines in Ireland (?) Perhaps someone else here will have the definitive answer to this.
Did you have a spine and/or brain MRI ? Did you have electric nerve testing on arms/hands and legs/feet ?
>It's true that there are other reasons for having repeatedly low B12 >levels, but the one that would first spring to mind would be Pernicious >Anaemia. If your GP does not think this is the case, you would expect a >valid reason given (instead of laughter) and further blood tests while >setting up a referral or two to see what could be the cause.
— The GPs couldn't care less what my issues are. They can barely bring themselves to take blood from me and only do so because of my diabetes, it was during routine blood testing that they first notice the low B12
Turned out the diabetic med was causing the low B12, I was taken off it (after an argument) and put on something else, but have had 3 or 4 (I've lost track) low B12 levels since then.
I looked up B12 online and followed the links to the Pernicious Anaemia website where I found a printable list of symptoms, which match all my medical issues from my childhood to the present day (fatigue, 'clumsy', brain fog being the main ones)
I showed the list to the doctor and she laughed at me for being able to "find things online", I've argued with her more than once about it, but she refuses to budge. All of the GPs in that clinic are the same "oh here she comes with her Googled symptoms LAWL"
>Blood tests that might have been done/ that you could request :
— I have asked for referrals and I gave the GP a printout of the information I got on here a few years back. She's done nothing about it since – apparently she 'forgot'.
>But you have neurological symptoms, which is why they sent you to the >neurologist (and why they should have chased up his report by now).
— they didn't send me to the neurologist because of my neuropathy (despite 5 nurses/doctors/chiropodists saying I have no feeling in my feet and my hands are affected), I have been demanding referral to a neurologist for 25 years (yes TWENTY FIVE years) as a follow up to hospitalisation when I was living in Britain. For some reason my British medical records were not sent over here, and the GPs won't listen to me. I've spoken to over a dozen GPs over those years and not a one of them would refer me on anywhere or listen to me about my symptoms, or anything...
(in case you're wondering, this is down to my mother's interference, she considered me to be the Laziest Person Alive, and when she realised I was of an age to make my own doctor appointments, with a doctor of my choosing, and attend the appointment without mother accompanying me – she went to the clinic to 'explain' to the GP about me being bone idle lazy and this being Ireland they ate that idea up without question)
>If you did not have neurological symptoms, the recommended >treatment in the UK is loading injections and then maintenance >injections every 2-3 months. If neurological symptoms are present, as in >your case, loading dose of injection every other day until no more >improvement can be had, review, then every 2-3 months. This is why the >results from the neurologist are so important.
— Apparently I have to chase the neurologist for the results. Why he hasn't passed them on to the GP I do not know.
>I 'm not sure, but I would expect same/ similar guidelines in Ireland (?) >Perhaps someone else here will have the definitive answer to this.
— when I was originally found to have low B12 I was given injections weekly for 3 weeks, then monthly for 3 months. I've had that 3 or 4 times, they never follow up on anything unless I chase them, which is why I've been given the injections again this year
>Did you have a spine and/or brain MRI ? Did you have electric nerve >testing on arms/hands and legs/feet ?
— No, I explained 'everything' to the neurologist; he checked my feet and hands using a plastic stick, and a tuning fork. He found I'd no feeling in my feet and reduced feeling in my hands. I was given a CT and an EEG (as follow ups to the tests done in Britain over 30 years ago), I'm waiting for an appointment for the nerve testing, and an MRI.
It sounds as if your best chance is to get that report from the neurologist, then, and go from there.
Have you got the secretary's phone number on an appointment letter ?
The delay on report could be due to ongoing tests: nerve and MRI.
The nerve test will only tell them (and you) what main nerves are doing, not smaller ones- which would involve a biopsy.
Is your MRI for spine or brain or both ?
The neurology tests might enable you to get B12 symptoms disentangled from your other health problems - and better treatment.
Absurd that the practice keeps allowing your B12 to deteriorate periodically- what are they waiting for ? A replenishment loading frequency would not affect the nerve test/ MRI scan results: if there is damage to be found, it will take a long while for B12 injections to repair it. But if they wait too long, you may not get that repair if myelin sheath is too damaged. Which is why I asked about inclusion of spine MRI.
>It sounds as if your best chance is to get that report from the >neurologist, then, and go from there.
>Have you got the secretary's phone number on an appointment letter ?
— I should have the number somewhere...
>The delay on report could be due to ongoing tests: nerve and MRI.
— That's what I'm hoping
>The nerve test will only tell them (and you) what main nerves are doing, >not smaller ones- which would involve a biopsy.
— every "toothpick" test I've had has shown almost total loss of feeling in my feet, but since they seem to think I'm faking it, I'm hoping a proper test will prove there is nerve damage
>Is your MRI for spine or brain or both ?
— brain only, unless I can persuade someone to schedule a full body one. I have an appointment at the rheumatology dept soon
>The neurology tests might enable you to get B12 symptoms >disentangled from your other health problems - and better treatment.
— Having read up on the subject I think B12 deficiency is the cause of all of my problems since childhood
. the nerve damage dates back 5 years to when I had a UTI that wasn't treated quickly enough
>Absurd that the practice keeps allowing your B12 to deteriorate >periodically- what are they waiting for ?
— god knows
>A replenishment loading frequency would not affect the nerve test/ >MRI scan results: if there is damage to be found, it will take a long while >for B12 injections to repair it. But if they wait too long, you may not get >that repair if myelin sheath is too damaged. Which is why I asked about >inclusion of spine MRI.
— I'll mention that to the rheumatologist, or to the neurologist, not sure when my next appointment with him is
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