Hi all - Can anyone recommend a good neurologist & hematologist in London to consult with privately about my B12 treatment/symptoms?
I’ve recently been found to be B12 deficient (150), high MMA, I’m 40 yrs old. I just finished getting injections over 2 weeks. My symptoms have worsened a lot during this time - it’s been scary. I’m now feeling like my whole body is vibrating much of the time, very strange sensation esp. in head & feet. I understand this can happen related to the b12 deficiency and doesn’t mean the injections are causing the problem. However isn’t it odd the symptoms have worsened so suddenly?
I’m concerned, should I not be stopping treatment now given these neurological symptoms? I also want to make sure there aren’t other underlying issues not detected yet. GP doesn’t seem to know what to do & suggested maybe it’s anxiety - I don’t think so. Appreciate any help!
My intrinsic factor antibody test came back negative. Other blood tests came back normal (thyroid, blood counts, kidney function, gastric parietal, etc).
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Hopefully someone will help you out with recommendations.
It's against forum rules to name health professionals on the forum but there's nothing to stop people sending you a Private Message (PM).
B12 deficiency is not always as well understood as it should be by health professionals so if you have the energy, try to read about B12 deficiency prior to any neuro appointment.
Some links I post may have details that could be upsetting.
If PA is suspected, PAS can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Local B12 deficiency guidelines
CCGs (Clinical Commissioning Groups) in England were replaced by ICBs (Integrated Care Boards) on July 1st 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.
Worth tracking down the local B12 deficiency guidelines for your ICB or Health Board and comparing the info with BNF, BSH and NICE CKS links. Some local guidelines have been posted on the forum.
Misconceptions (wrong ideas) about B12 deficiency
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Read the blog post below if you want to know why I urge UK forum members to find out what's in local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
I am closing this thread to responses as it is against HU and forum policies to name or promote specific medical practitioners. People can message you privately if they want to.
IF test is good for proving you do have PA but a negative doesn't rule it out because the test isn't very sensitive and gives false negatives up to 60% of the time (varies with test methodology).
It isn't uncommon for symptoms to get worse before they get better. On the neurological side (because B12 is involved in the process that resets neurotransmitters) this is because your brain needs time to adjust to the fact that signals are now coming through much stronger.
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Neurological Symptoms of B12
worsening neurological symptoms B12 only 3 monthly
NHS Guidelines 2-monthly injections for B12 deficiency patients with neurological symptoms
Dr won't treat for B12 even though I have neurological symptoms
