Update!! Spoken to DR

Had my telephone appointment this morning, the Dr was nice and did listen to my concerns, however, he wasn't prepared to give any further B12 jabs other than the 6 loading and then every 3 months, he said he will see me next week to review my symptoms. But he said my Nuro symptoms ( tingling, numbness, pins and needles, tiredness, brain fog) were very general and could be related to anything.

I explained about the 2nd paragraph of the BNF and said I was worried about long term nuro damage, he did say he would research before he sees me next week .. So I remain hopeful

13 Replies

  • And if that fails then demand a referral to a haematologist.

  • Hi Kellybee let's hope he he does do his research and gives you the treatment you need.

    Best wishes to you and please keep us informed.

  • Thank you

  • Good luck. I'm dealing with exactly the same thing, so I'm hoping to insist on a haematology referral

  • Good luck to you also..

    I've been referred to a Haemotologist thankfully but not sure how long that will take

  • could be related to anything

    Well, not quite anything - but there are many possible causes for peripheral neuropathy (which is what you have).

    However, one of the common causes (probably second to diabetes) is B12 deficiency. And, what a surprise, you have low B12. It doesn't really take Sherlock Holmes to make the connection, does it?

    So you should be on 2-monthly jabs at a minimum.

    Even if your doctor is stupid enough to not be able to come to that conclusion - he still should be investigating which of the possible causes of peripheral neuropathy you're suffering from.

    So, if it's not a B12 deficiency, you want a referral to a neurologist. Who will, almost certainly, see your B12 results, hear you complain of low B12 and make that massive leap - then write a stinky letter to your GP asking him why he referred a simple case to the experts.

  • My DR did suggest a referral to a neurologist as it happens .. ( oh god I hope he doesn't then as I'll be wasting an appointment that could be of use to someone who needs one)

    Thank you for the reply .. I'm going to have to ask my DR not to do that.

  • It might be worth seeing a neurologist anyhow. Your doc is correct in saying that there are many possible causes of peripheral neuropathy and it may be that yours isn't caused by B12.

    That's what happened with me. My neuropathy started when I got diagnosed with PA, but it continued to get worse, not better. My neurologist thinks it's due to a separate autoimmune problem and I'm off to UCH in London in 8 weeks for the experts to have a look.

  • Oh goodness.. I hope all goes well for you ... It must be a very worrying time for you .. I'll keep everything crossed for you

  • Has your GP even investigated the neuropathy - by testing for sensitivity to touch in your feet; testing your balance by getting you to walk heel-to-toe with your eyes closed; testing various reflexes?

  • No he's not done any of that .. But he has asked to see me in person on Tuesday so maybe he will? I'm not sure, he hasn't said anything like that

  • ha! don't hold your breath! But you might get lucky.... let us know

  • Drs don't seem to want to roll their sleeves up and get stuck in anymore do they? Maybe that's a bit old school now. Probably more to do with time: the 10-minute appointment doesn't give much opportunity.

    Hang on to neurology appointments- mine (requested early January) is not till May 5th and that is a good result- it makes sense to keep it because like fbirder said, things can change for better/ worse along the way and you would be left with a long wait. You can always cancel when and if you are certain that you don't need help.

    Best of luck to you, Kellybee -and you, fbirder

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