advice needed

Hello i was diagnosied with pa in feb 2011, at the same time the hospital said i had degeneration of the spinal cord.

I am on b12 injections every three months and take folic acid 5mg one aday, ferrous fumarate 305mg twice a day. i have also had a bout of rosacea which cream help so i no longer look like a spotty teenager :)

I am unable to tolerate wheat (causes me pain, and rushing to the loo) i have recently had a procedure(sorry cant think of the name ) going in from the botton to investigate IBS.

My main concern is the pain i get across my shoulders,hands and neck. It last fpor about 15-20 mins then painkillers kick in, i am left with hand weakness and a awkward feeling of where to put my arms? Sometimes i dont get the pain just the numb hands, i am constantly dropping things and writing with a pen is getting harder, its as if my hand forgets to hold on to it :( this then makes me very tired that all i can do is sit down :(

I have been to the doc several occasions but he just draws a diagram of the spine and tells me its my posture?

I feel more of a nusiance going to the doc but wnt the arms to be normal and pain free, i want my life back as i have to rely on my husband even to open my toddlers beaker. My husband even understand me when i get words back to front, which is irrating but also funny.

Is this familiar with someone else out there, would be nice to have someone understand when i say my arms are having a bad day :) xxx

7 Replies

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  • Hi,

    Sounds like you could have neurological symptoms??

    What did they advise re the spinal chord degeneration??

    If you are still having neurological problems then in theory you should be having more frequent B12 injections.....

    May I suggest that you pop over to the PAS website...there are loads of individuals who have had chord problems with far better knowledge than I.....

    Take care,

    E,x

  • Thankyou Eccenrica, i have now joined the pas site, im due to see a orthopeadics in 2 weeks time, im trying to go with some info on pa and the link to my neck pain.

    The advise i got regard the degeneration of the spinal cord was none, they started me on the b12 injections and folic tablet, been on iron for two months now as well. I thought the spine was not important to pursue as all the focus was on the b12. Hence why it has taken so long to be refered back to hopsital for the spine:/

    It was only when i disagreed with the doc saying it was my posture that i saw another doc that said as i have the degeneration of the spine that maybe it had got worse :/

    fingers crossed the hops wont says its my posture, might say a few harsh word back to them if they do :D

  • The spinal chord and brain problems are due to a long term B12 deficiency.

    this can affect every cell in the body.

    you should initially be on a regime of injections of Hydroxycobalamin (B12) every other day . the blood serum test does not reflect the true value of B12 concentration in the brain/spinal chord.

    the 3 monthly regime are only guidelines. the doctor is permitted to inject once a month , if so inclined. a lot of people need more frequent injections.

    no wonder people ''go privately'' .

    you might buy ''Could it be B12 ?'' by Sally Pachalok , which the doctor might deign to read.

  • It sounds to me like you're not getting enough B12, three monthly just isn't enough for most people. Your numbness and lack of co-ordination are textbook neurological symptoms of PA and the pain in your neck/shoulders can be explained by long term nerve damage resulting from PA. You need to go back to your GP, emphasize your neurological symptoms and request to be put on loading doses every other day until the symptoms disappear. This is in the BNF (British National Formulae) guidelines. Also, request to be put on more frequent injections, most people require monthly, so anything you can get close to that is vital. If your GP refuses to put you on more frequent injections, give us a call and we can provide you with details of a private doctor we work closely with.

    Best Wishes,

    Ken.

  • hi

    just found this site and have to say I am loving what I'm reading!!! I've had PA for about 12 years and both my daughters have it too, we never last 3months between injections and normally have them every 6-8 weeks, I'm a nurse so I self administer mine and give my daughters there inj too, sometimes we need the top up more frequently, as yet our gp has supplied the hydroxocobalamin on prescription, but we have to be careful not to reorder too frequently! glad other people feel the need of injections more than every 3 months!

  • thankyou for the replys, on wed i asked my gp if she could refer me to a neuro and heamotolgist, her reply was no, when i said about pa her reply was im not anemic....my response was why have you put me on 2 tablets a day of 305mg ferris fumate ( i think thats it called that) she then looked at my blood results and said ah yes they were low :(

    She wont refer me even though i have now said you dont need to be anemic to be pa.

    on a plus side i phoned the hosp and they managed to bring my appointment from july to yesterday, i had a gastrolo thingy done :) the result is i dont have chrones, the blood test results showed several to be on boarderline so i have to have them done again but this time i need to include wheat in my diet, i have stopped eating wheat since 2009 due to a fallopin tube removal, and seperation of womb and bladder that had fused after the op i found i could not keep wheat food in :/

    The gastro also has booked me in on friday for a barium meal test plus in a few weeks time a camera down the throught.

    the blood test that has been requested are crp, ttg, esr, ferritin, these are to be done in a few weeks.

    She has also said i should get referred to neuro for my other symptons, hoping a letter is being sent to doc to say that as my doc wont listen to me. :/

    the only thing i got out of my doc were my blood test results which i quickly wrote down, in jan 2011 my b12 was 99ngplitre and my folate was 3.5.

    in march 2012 my b12 was 1521 ngplitre and folate was 24.5. she also said my iron was low but didnt give me result.

    got my b12 jab on monday going to ask nurse if she can print me a copy of all my blood test, then send a letter to the practice manager asking for all my records, will work out myself whats wrong :) xx

  • Even if the doc wants to stick rigidly to the BNF it should be every 2 months for your situation with all the damage you have I would suggest.

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