PA with Neuro

So update on my saga with PA with Neuro . I've been PA since 2002 with 3 monthly injections. GP would not give b12 on a more frequent schedule so that's how it's been until recently when I hit rock bottom and my Neuro symptoms became so severe that a new GP to the practise agreed to give me 3 weeks of alternate days injections and referred me to Neuro at Preston Royal hospital. I finished my "loading /top up doses on Friday and my Neuro symptoms have returned. GP has refused even to consider any further b12 treatment and offered me painkillers! I pleaded with her to refer me to a specialist but she said she didn't know we're to refer me to ! She also said she could not help me any further with a more frequent b12 schedule (currently on 8 weekly) but what I do privately is up to me. Feel so down . But onwards and upwards so I've joined the ranks and purchased b12 from as many of PA survivors have already done. What I'm concerned with however is that there is some degeneration of the spine and it's not been properly investigated .

6 Replies

  • In talking with the GP have you specifically mentioned the degeneration - which would probably point back to referral to the neuro again - which might be why they are feeling at a loss. May be you could try contacting the neuro you saw and asking them specifically about degeneration.

    To be honest - though the reluctance to look at more frequent than 8 weeks is frustrating the fact that your GP mentioned what you do privately being up to you shows that they are a lot more supportive than many others. Although there are arguments that guidelines are guidelines and can be broken there may well be pressure from within the practice to stick to guidelines and there have been a some quite well publicised instances of doctors suffering a lot of criticism and even suspensions for prescribing more frequently.

  • Thank you for ur speedy reply. I'm gonna try and speak to Neuro tomorrow . It would give me reassurance if I had a scan

  • Hello Kapat1. Just wanted to say so sorry that you're having so much trouble getting the B12 you need to get and stay well.

    You're not alone in situation is quite similar to your's...a gradual decline on the three monthly injections (over several years), with an increase of neurological symptoms (amongst others). Appointment with a neurologist is immanent!

    Trying to get more B12 from medics has been like hitting my head on a brick wall. Even when presented with guidelines, they positively refuse to prescribe and some have been really hostile and rude: bullies, in fact!

    So many people here suffer exactly the same treatment: it's a disgrace!

    I, like you, took the decision to start self injecting and there has been some slight improvement since then. I'm hoping for more!

    Sorry, but haven't had time to look at your profile - are you keeping an eye on vitamin / mineral levels etc (the cofactors). Having really good levels of these make a big difference to the bodies ability to 'use' B12 effectively. Lots of posts about this on this site if you want more information.

    Gambit's suggestion of going back to your neurologist for further advice is a good one...if your neurologist won't see you as a follow-up, the you could always ask your GP to re-refer you. Or, you could ask for a second opinion / more tests with a different neurologist, if not satisfied.

    I wish you the very best of luck with the self-injections. Advice is always available here if there's anything you're not sure of.

    Take care and pop back to let us know how you're doing.

  • I bet you will be feeling much better soon when you start your injections. And a definitive test regarding spinal degeneration will certainly help to sort it all out.

    The very best luck to you! :-)

  • So sorry to hear about your on going problems. I had only just been diagnosed with PA & just finishing my loading injections. My GP (in Bamber Bridge) didn't even ask me about neuro symptons & I only linked what was going on with my body when I started reading about PA. Spoke to nurse who just says wait & see how the injections go. After 5 injections i'm seeing very little effect - my tongue is not as sore. I have also been diagnosed (in Jan) with obstructive sleep apnea so battling a couple of things at once. Hope you get some progress from PRH & would love to know how you get on.

  • Hello Sue_higgins54.

    Sorry to hear about your recent diagnosis but you're in the right place to get help and support.

    Just wanted to say...your nurse is so WRONG!

    Taking a wait and see approach to someone with neurological symptoms is ill informed and positively damaging. Neurological damage can become irreversible if not treated with sufficient B12 in the early stages.

    The British National Formulary (BNF - the medics prescribing bible) and all other guidelines state that B12 deficiency / PA with neurological symptoms should be treated with every other day injections of B12 UNTIL NO FURTHER IMPROVEMENT, and then injections every 8 weeks (which is still not enough for many people - but that's a tale for another day)! For some people, is can take many months.

    Both your GP and your nurse will have a copy of the BNF on their desks' and can look this up in thirty seconds flat! But they will probably have to read further than they usually do as it's the second entry.

    I seriously advise that you go back and ask them to put you on the B12 regime advised in these guidelines 😀.

    Can't put links in on my iPad but if you do a search for BNF guidelines, you'll find them on this site. Also, if you click on my username and go to the first post I wrote, you'll find lots of useful information that was given to me by others here.

    I'm afraid that medics and nurses are remarkably ill informed about all things PA and B12 deficiency and you are likely to meet levels of ignorance and hostility that will surprise you. Especially if you are requesting more B12.

    Please do come back and post questions if you need any further help and advice.

    Good luck.

    P.s. Sorry for 'high jacking' your post Kapat1 😀

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