Bizarre aches and pains with PA

Hello all,

I suspect that the strange sensations I'm suffering from at night are all part and parcel of this, but thought I'd ask if anyone else has these symptoms. I wake at night with 'buzzing feelings that start in the thorax and spread down my arms. I also get a buzzing feeling in a band across the bottom of my back which is a weak spot, it intensifies until it becomes painful. I feel certain it's the nervous system as 20 minutes of deep breathing often eleviates the pain. I've also made a connection between the frequency of the pain and my diet; if I eat sugar I'm almost sure to get the pain and bizarre sensations. I'm currently being treated for PA (but not adequately) my doctor has prescribed three monthly injections (no loading doses) and seems to think it's enough as my B12 reading was 257. I've had just one and the beneficial effects wore off after 3 weeks. I'm seeing her end of January and hope to persuade her to change the treatment, I'm going to ask foran MMA test and homocysteine.

9 Replies

  • I suggest you see someone sooner and get yourself more B12 ASAP!

  • I agree Denise but it's not so easy to do (as everyone here can testify) I'd wait a couple of months for another appointment and the next doctor will probably be as cautious. My doctor does listen which is something so I'm hopeful. I am tempted to go 'maverick' and treat myself but then you're on your own with no follow up. I'm keeping this option as my last resort.

  • I've done it. I'm sure I would be dead by now if I hadn't. What is the cost of better health vs permanent damage?

    Why can't you see your Dr again sooner?

  • She's a specialist so appointments aren't easy to get. She wants to see how the treatment is going (badly!) and she's prescribed blood tests every two months, I'm hoping the tests will support my point of view. She did say she would do the MMA and the homocysteine test in the Summer, but when she offered me the jabs I was so pleased I forgot to remind her to do them. Next week is jab week so there's some relief on the horizon!

  • Thank you for your reply : I understand now.

    I really sympathise and so hope you can get the level of treatment you need to get and keep well.

    Have you got the BCSH guidelines for B12 deficiency which say to treat neurological symptoms every other day until they are resolved? It's important, as is doing this again if they reoccur.

    It is also important to explore all avenues in case one problem is masking others.

    Very best wishes to you! x

  • Thanks Denise, with a bit of luck I'll get what I need. I live in France but the attitude to B12 seems to be the same as in the UK. Did you have any difficulty getting the right treatment ?

  • Yes, lots. 20+ years of living with a diagnosis of chronic fatigue syndrome instead of B12d and then a year of increasingly acute symptoms until in mid July I couldn't walk or talk. Fortunately I had got things sorted by that stage so it was only a case of actually doing the daily injections and taking lots of additional sublinguals and supporting supplements to get me well again.

    And I am good at constructing a considered argument for something and my Dr is one of the best! If not I would have had to have just bought everything online. The trouble was I was really too ill to get my head round doing that then. I will order some now to use in case my NHS supplies get stopped for any reason.

    For me, because I had got so bad, I now can't go more than a few hours without taking some more B12. However if I constantly top up I can live and work relatively symptom free. It is amazing!!

    If it wasn't for the people on here I am sure I would have died.

    Good luck! X

  • I've given up trying to get any co-operation from my GP. They don't listen, disregard the guidelines and make you feel like it's all in your head. Mine even said he thought I was "barking up the wrong tree" a week ago. I wasn't willing to wait for the NHS wheels to grind as my health is too important to me so I'm now sorting myself out with guidance from the good folks here. No regrets.

  • Hi Hunny, I may well have to do the same, it makes me feel so frustrated waiting for appointments to come around, but my specialist is lovely and if I can make her do the right tests maybe I can get somewhere.

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