Only just beginning to put two and two together

Even though Iv'e had pa for a very long time' Iv'e managed up until now!! I have my injections 12 weekly After having radiotherapy 5 years ago' my symptoms of pa have become much worse. I now have dreadful head/ear ache's tingling pins and needles in my finger's cramps in my feet' My brain's like jelly unable to think straight' forgetting word's how to spell simple word's or even a word in the middle of a sentence It's like playing charades a guessing game people have to try and guess what I'm trying to say when the fog Is bad and It Is most days cfs and my depression Is very black I have only just realized through reading more about pa that these are all symptoms of pa going to see my doctor soon to discuss what I can do to help me feel better hope she can help advice please 😳

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  • Really sorry to hear that you are feeling a lot worse -

    You obviously seem to have neuro symptoms so recommendation would be shots every 8 weeks rather than 12 if following the NICE guidelines though even that may not be enough.

    I supplement using nasal sprays - others find sublinguals and even skin patches can help them.

    B12 isn't toxic and there are no known side effects from having low B12

    You should ask your GP to test your folate levels as you need good folate levels to metabolise and use B12 properly. You might also want to think about supplementing - the only known downside of high folate is that it can mask anaemia caused by B12 deficiency, cancer and a few other conditions

    I really hope that your GP listens but be prepared for her to be very sceptical - but don't assume that means you are mad - far from it.

    You could have your B12 done again but it would only be significant if it is coming back low (below 500 say) so don't take it as gospel if your GP says that your levels are normal so it can't be the B12.

    You could also ask to look at any medications you are on to see if any of those might be interferring with your ability to metabolise B12 properly.

    On the other hand it is possible that more than one thing is going on so if they want to test to rule out other things that isn't a bad move.

    My personal experience was suffering from depression and anxiety for decades before ending up in hospital with a broken ankle - being told that my blood tests showed my B12 was low (but not given any real indication what that meant), Going home with a set of loading shots. GP not really knowing anything about it. Locum telling me I would need the shots for life ... continuing to go down hill and getting to the point where I was struggling to walk. Trying to talk to my GP who dismissed any possibility that it was related to B12 and just wanted to push anti-depressants on me. Coming home, howling, deciding to use a nasal spray that had been helping me get through the worst at much higher doses and within 2 weeks I was happy perched at the top of a ladder pruning my grape vine ... and 3 months later I realised that the depression and anxiety had lifted and were no longer shaping the way I see the world.

    Again, I really hope that you have a GP who will listen.

    cks.nice.org.uk/anaemia-b12...

    also this on what to do if symptoms persist

    cks.nice.org.uk/anaemia-b12...

    Nobody has ever been able to produce any evidence for the 3 month period on maintenance shots - on the continent (France Germany) it tends to be monthly.

    People just are different on how long they retain B12 and how well they can utilise it but the guidelines really don't reflect this.

    You might also find it useful to print of a checklist of B12 symptoms and take that with you - just in case the GP seems to be unaware of what the full range of symptoms are ... and tick off the ones that apply to you

    pernicious-anaemia-society....

  • Thank's so much Gambit62 for giving some really good advice I do need to get to the bottom of these symptoms so I'm going to take your advice an print off checklist and show to my Dr thank you again

  • Keep a log / diary of your symptoms / food / meds and exercise. You may have also developed allergies along the way.

    Use the log as evidence of all your neurological symptoms and ask your dr to increase your dosage hydroxo-b12 to once a month at least. Invite him to keep a copy of your log in his records.

    Also take daily supplements such as folic acid, Vit b6 and a multivitamin such as centrum. Also biotin.

    The log will also help with short term memory. There is a delayed reaction or symptom of 6, 12, 24, even 48 hours after eating something. Also some symptoms follow the jab due to increased metabolism and detoxing. These occur a regular intervals each jab and you can sort them out from the rest.

    Your GP may react like you are suffering from anxiety. Which is a B12D neurological symptom in itself. He may want to put you on antidepressants which only make matters worse. Don't do this.

    Keep your GP informed and speak calm and firmly - not like the neurotic you may feel like. Explain that the neurological damage has continued at the normal maintenance dosage levels.

    Try not to stress out as this uses up more B12. Hopefully this method will give you back some control so you can have a calm but serious discussion with your GP

  • Good for you for researching, winter rose.

    Sally Pachlok's book, 'Could it be B12? ' recommends the patient and their family be assertive when neurological and memory problems are involved and stem from B12 deficiency. Aggressive treatment with injections is in order as each day you wait increases the chance that the damage may become permanent.

    This has happened to my vegetarian relative, whose memory has not yet returned after dental injections, owing to GP delaying treatment, ignoring guidelines, and diagnosing dementia. The surgery is still refusing to acknowledge memory loss, tingling, numb toes and glossitis as symptoms of severe B12 deficiency. She therefore struggles to get the more frequent injections she needs - at present every two months. Each time, a GP in the surgery agrees to treat monthly, the decision is reversed by another!

    As pvanderaa has suggested, it is a really good idea to keep a diary.

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