Hi all!

Been following your community for a month or so, and thought I'd finally jump in and say hello. You all seem to contribute some valuable information and support. I'm in the U.S., and after 10+ years of being poked and prodded, tests, surgery (all from neurologists), I've finally been diagnosed with PA. It was actually such a relief and explains so much. Have finished my loading injections, but don't think I had enough. I'm kinda going "rogue" with my shots right now in an attempt to feel better.

14 Replies

  • Hi Annalise,

    It really can be such a relief when they finally get a diagnosis. It may take some time to sort out a treatment regimen, especially if your needs don't fit in with what the professionals think you need. But there is now a path that looks as if it may lead to a solution.

  • Hi fbirder. You're definitely one of the people I've seen who have already helped me a lot by reading your replies to others. You seem to be very helpful and knowledgeable. Thanks for caring so much about others!

  • Good news that you have a diagnosis.

    This US website might be helpful.

    I found these UK based websites useful.


    "Have finished my loading injections, but don't think I had enough"

    From what I have read people seem very individual in their response to B12 treatment.

    Some people are fine on standard levels of treatment and some need a lot more B12. Some respond better to a particular form of B12. There is Cyanocobalamin, Hydroxycobalamin, Methylcobalamin and Adenosylcobalamin. Some people find certain delivery methods work better for them than others eg injections (IM and SC), sublingual lozenges, skin patches, nasal sprays, oral sprays,

    Have you read these books?

    "Could It Be B12" by Sally Pacholok and JJ. Stuart

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

  • Hi Sleepybunny. Thanks for the info. I've been on some of those links and have read the first book. I'll def get the 2nd book. After 10 years of wrong diagnoses, I sought out a neurologist who specializes in MS. (Was convinced I had it). Luckily, he sees this all of the time and knew what to do. He prescribed Hydroxy for me to inject Sub Q. But only 2x a month. I also have the secondary problem of Subacute Combined Degeneration, with many problems. I thought the loading doses for that were every other day until no more symptoms, or no further improvement. So I started last week doing every other day.

  • Martyn Hooper who is the chair of the PAS (Pernicious Anaemia Society) suffered Subacute Combined Degeneration. There's info on that on the PAS website and info in the library section.

    He's written several books on PA and B12 deficiency. I'm pretty sure that a person with b12 deficiency and neurological symptoms should be treated intensively. In the UK it's supposed to be injections every other day until symptoms stop improving but this does not happen in all cases.

    In the UK there are national guidelines for treatment of B12 deficiency. Sadly these guidelines are not always followed. Is there something similar in the US or in your particular state or region?

  • I've been aware of the U.K. guidelines and have been following those since last week, because I can't find any U. S. guidelines. I'm the type of person that tirelessly searches for info. It's hard to believe that the U. S. would have them.

    Was just on the PAS site :) I read a few of Martyns blogs. He's really knowledgeable! Trying to find his book. I assume it will be on his website.

    Does one join the PAS, or do most people just check it out and gather info? I really appreciate all of the resources you've shared with me :)

  • I would encourage you to join PAS. It's a one-off payment of 20 of our English pounds (about $30) which will go to help with the running of the society.

    Martyn's book should be available on Amazon. Yup, here it is...

  • Martyn Hooper seems like a very caring guy, with lots of info and life experience to share. PAS looks like a society that would be well worth my joining. I know the the U. S. has the B12 awareness org, but I think that's about it. Can't even find guidelines for treating PA.

    I looked at the book link, ( thank you), and it's the Kindle version, which I don't have. I was looking all over Amazon and the PAS site for a paperback copy, but to no avail.

  • Oops! Here's the paperback -

    Martyn is a good bloke who devotes huge amount of time and effort trying to get the top guys in the medical professions to take B12 seriously. And he is succeeding, slowly but surely. I gave my GP a signed copy of his book and I have another for when I meet with a haematology consultant next month.

  • Ahhh, thanks!! Buying it now.

    I feel like I'm being so obsessive about finding out every bit of info! Is everyone like that when they finally get a diagnosis?

  • I'm a retired scientist. I spend huge amounts of time hunting and collating info about my health problems.

    It makes up for the things I used to do (archery and birding) that I just don't have the energy for.

  • That's seems to be about right with the gathering of info. Especially for you. It's ingrained in you as a scientist, I assume.

    I've always had the need for knowledge. Whether professionally or for personal use.

    I have a pretty good handle on what PA is, and the treatments needed. I just had noooo idea that it could cause all the horrible neuro issues, depression, etc etc.

    And I did just purchase the book. Thank you, again.

  • You are lucky you received a diagnosis. Any doctor I have gone to, I show them a list of what are supposed to be standard tests for B12 deficiency, and they invariably toss the list back at me saying that they don't know what those tests are!

    Google Chris Kresser and B12. He has a great forum, with a lot of people who know all about B12 and PA commenting.

  • Hi 2Old. So sorry to hear the doctors are so ignorant. I can't believe how common this is. I will definitely Google Chris. I like to have as much info and feedback as possible. Especially being so newly diagnosed.

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