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PA?? need to hear success stories!

Posted , 3 users are following.

kerry91
kerry91

My problems started 7 years ago when I had bad digestive problems, unbelievable back pain and shooting nerve pains down my arms, blood tests showed up nothing and doctors thought it was in my head. 2 years ago it all started up again, I lost 11kg, my legs were so weak I could hardly walk and was off work for months, blood tests showed same antibodies against paretiel cells and gastrine at 1000! but B12 and iron were normal I was diagnosed with atrophic gastritis; back to today, I'm really tired and my legs are bad again, my new specialist has just done some tests, B12 is 267 and my ferritine is just 12. I'm also producing intrinsic factor antibodies (28,59 Au) I'll see the specialist in August but I've got a good idea that my results point to P.A. What I want to know is how soon after treatment can I hope to feel 'normal ' again? I'm eating liver every day at the moment sad in an attempt to feel better.

0 likes, 5 replies

5 Replies

  • aveline
    aveline kerry91

    Posted

    I had weekly injections at first - took 3 weeks to really kick in, didn't go all the way back to normal for a while, but eventually...expect it to take a while and enjoy the steps along the way!  You'll notice you're not out of breath like before, your legs will feel remarkably better and then the nerve damage starts to reverse itself and that's the best part to me...oh, and the brain fog lifts!  

    I didn't have all of your symptoms and you didn't even mention headaches or brain fog/forgetfulness or ringing in your ears, so I guess we all suffer differently.  You'll know after a month if something is still "off" it may not be related (like your stomach issues if they persist, maybe?) I certainly didn't lose any weight.  I'd walk a few miles every day but gain weight because I was sedentary otherwise, everything was too much effort.  

    I will bet that in the first week of treatment, you'll get up from a sitting position and walk and think to yourself, "Oh, that wasn't bad!" There will be at least one or more symptoms that improve very quickly!

    Good luck to you!! smile

    • kerry91
      kerry91 aveline

      Posted

      Thanks for the message, the headaches and the brain fog I put down to the menopause and just soldiered on, goes to show! The gastritis is related apparently, you're lucky if you don't suffer from that! So pleased to hear that things will improve. 
    • aveline
      aveline kerry91

      Posted

      Well, my IBS was flaring up and I saw a GI doc to rule out Coeliac Disease (my son has it, my bloodwork was negative, but my Primary wanted me to have the biopsies/endoscopy)...I have to say it's SO much better now...perhaps that WAS my low B12 messin' with me!

      Kerry has great points, and you may feel worse - at least at times - plus you won't exactly bound around with extra energy...which is what I THOUGHT would happen.  But, you'll notice a positive difference, which gets even better over time. Please take her advice so you can start healing soon!

       

  • marion29181
    marion29181 kerry91

    Posted

    Hi Kerry, 

    You really should be getting B12 injections by now. You have antibodies which are preventing you from absorbing B12 via the digestive route. Have you thought of phoning the Pernicious Anaemia Society, they will provide you with information to give your Doctor to reinforce how important it is to get treatment as soon as possible. Permanent nerve damage can result if it is left untreated. My levels were 176 when I began treatment, a year ago last March. I am gradually improving, my head is less foggy, and the tiredness and muscle pains are reduced. MY GP has recently agreed to trial me on more frequent injections, to see if I will improve even more. Sometimes you feel a bit worse when treatment first starts, and I think that's the body suddenly being given something it's lacked for so long. Once you get your diagnosis you should be given loading doses, six injections over a fortnight. If you have neurological symptoms the injections should continue every other day until no further improvement. My doctor put me onto the "one every three months" after my loading doses, and I don't think this was enough for me. I have supplemented myself by using a spray under the tongue, don't do anything like that until after you're diagnosed though, it will mess with your results. Good luck with it all, and I hope you'll soon feel much better. Expect it to take a little while, for your levels to get run down usually means you've been getting low for a few years. Marion 

    • kerry91
      kerry91 marion29181

      Posted

      Hi Marion, Thanks for taking the time to reply, As I live in France I don't think the PA society will be much help, but my Doctor seems on the ball so I'm sure I'll get tthe treatment I need. I agree with you about not supplementing for the moment as I was supplementing with B50 tablets when I had the initial tests and I think that put the doctors on the wrong track. My B12 is just in the 'normal' limits but I know it will get lower because of the antibodies. Fortunately the nerve problems aren't bad at the moment I just have the annoying sensation of having a weight on my nose,it comes and goes. My appointment is only a few weeks away so I'll just have to hang on in. Many thanks
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