So, I've only had it for 38 years and,,,,,,

it's really only in the last couple of months am I actually learning anything about it. all I could have told you was that when I first git it and it was undiagnosed for months, I had no energy. I was TATT,, yeah that IS a medical condition, lol

I had palpitations, was vomiting all the time. MY GP at that time never sent me for a blood test. In fact he told my Mum he thought I was anorexic and it was 'all in my mind'. It got to the point where he refused to see me. Then one day Mm demanded he saw me, and he said OK I will but she'll have to come here, I can't waste my time coming out. I collapsed in the surgery and he asked me if I wanted to go to hospital. I said no, but I want to know what's wrong with me, I'm not imagining it.

I'd only been in hospital half an hour when they told me it was PA. Later when I went back to my GP he said he was sorry, if he had left me another 2 weeks I would not be here. Then he said if I repeated that he would deny he ever said it. And so, my admiration for any medical professional was effectively switched OFF, for all time!

I had my shot today, after 2 months (more really) of sheer hell. The first thing I noticed is how alert I felt, and this was immediate,, driving home from the docs. Then how warm my hands and feet felt, within an hour they were almost uncomfortably hot. Even swollen a bit. It was as if I'd had no circulation and it had suddenly started up again. I've never documentsed my symptoms before but since I'm now on a 3 minth trial I am going to start. Has anyone else ever experienced these symptoms and how quickly they resolved after having a jab?

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  • Hi auntieb. Really pleased you've had you shot ๐Ÿ˜€.

    But what's this about a trial? Nonsense. You have PA and you should have injections for life - ongoing and permenant basis.

    And if I remember rightly you have neurological symptoms?

    Have you had six x loading doses (one shot every other day until,you've had six) to get your levels up quickly? You should have.

    And this should be followed by injections every other day until no further improvement - for up to two years, if necessary.

    Your GP can find this information about this neurological regime in a book called the BNF (it's the doctors' prescribing bible) - he will have a copy on his desk and can look up the treatment guidelines. It's the second item down so he'll have to read further than usual.

    Here's a link to a guidance document from the BSH which will tell you exactly what treatment you should be receiving from your GP (highlight the important at bits about treatment for neurological symptoms, take it along to your doctor and try and get him to read it while you're sitting with him). Take some with you if you can...GP's are often more attentive and less hostile if a witness is in the room (sad, but true):

    onlinelibrary.wiley.com/doi...

    And here's another one that emphasises the importance of treatment for neurological symptoms and the safety of treatment with B12 injections:

    stichtingb12tekort.nl/weten...

    Based on what you've said above, and the fact that you have neurological symptoms, the idea of a trial is just nonsensical - and so not in line with any of the guidelines.

    Please go back to your GP and ask him to put you on the neurological regime - you are at risk of potentially irreversible neurological damage if you do not get the correct treamtment (I say this not to frighten you, but to try and show you how wrong your GP is and how important it is to stand up to him).

    Sorry, it's really late now so I have to go...but post again with an update and shout up if you need more help. We can provide guidelines and evidence for you to take along to your doctor if he still won't treat you, and lots of people here to help.

    Oh and....about the symptoms...yes, things do often seem to feel worse - as you rightly recognise, it's to do with things waking up and starting to work again...experienced by many...๐Ÿ˜€ X

  • Hi Foggyme

    Thanks so much for your reply and your concern. I probably did';t make it clear because I actually posted in more detail about the trial in my other post. I do hear what you;re saying. But I have had PA for 38 years. Would these loading doses and this treatment still apply to me now? Even though I have had innjections for the last 38 years?

    The trial was simply that I saw my GP today and asked to go back to monthly injections. I did point out that guidelines for neurological symptoms are 2 monthly injections but I said I did not think that in my case that was enough. I said I've out up with 3 monthly for several years now, but failing health and age were getting the better of me and I can't cope any more, so I want it every month.

    i told her that if I got a refusal I was prepared to take charge of my own treatment and purchase the syringes and ampoules online and treat myself. I said I would prefer to be treated under the suoervision of my surgery but if they were not willing to agree to my request that was what I would do.

    Her response was that No, she didn't want me to purchase B12 online and she preferred me to be under their supervision. So she suggested that for the next 3 months, I have my B12 monthly at the surgery and monitor my condition. If there was an imoorovement in my health then it would stay at monthly. If there was no improvement it would revert back to 3 months. (As I suppose that would show it wasn't the cause of my symptoms).

    I agreed because I knew it would be better, and I am going to document my health and track my symptoms to show that. I will tackle the self-injecting again once the frequency has been set. Hope that's a bit clearer but if you still think there's cause for concern, please do say so. Despite how long I've lived with this, it's all new to me. I've just lived with it up to now and never questioned my treatment.

  • Phew Antieb...that's a relief ๐Ÿ˜„.

    I replied late last night and didn't check back on your previous posts.

    Very impressed with your perseverance...and pleased that you're able to trail more frequent injections.

    Really hope it makes a big difference for you.

    Good luck ๐Ÿ‘

  • Well phew from me too,, haha

    I was a little worried there. Still am to be honest but hey, we'll see how it goes. I'll keep you all posted xx

  • So auntieb in all those years have you ever had your Folate level checked or have you supplemented with folic acid?

    Your "battle" to get more frequent injections is not new and your experiences sound similar to mine. If you click on my name you can read "My P.A. Story".

    I wish you well.

  • Hi clivealive

    In answer to yoiur first question,, I wouldn't know. But I have had Folic Acid,, for many years I took 5mg a day prescribed by my doc. But several years ago he changed it to one every other day, So I'm guessing that would be a yes. But I cannot recall when I last had a B12 test and have never been told what my resukts are. Yes, our stories are similar, apart from the fact that yours was caused by having part of your stomach removed. Me? I have no idea why I got it. I was fit and healthy. I grew up in Australia, came back to England at 17. Then I took ill at 22. I had a bone marrow test as well as other tests and was told that I do not produce Intrinsic Factor, which is the hormone that extracts B12 from food. That's it, all I knew for a long long time, till I found this forum.

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