Keep going, there is hope!

Hello, this is only my second post but I wanted to post to give people hope and to say keep going. To cut a very long story short, following being diagnosed with B12 Deficiency in September 2016 (lots of neurological symptoms due to it taking so long to recognise) I was given the initial six loading doses and then a three monthly injection. This was not adequate and my GP agreed to do more loading doses and then once every month for the rest of my life. Again, I could not last for a month with my symptoms returning after two weeks. I had been referred to a Haematologist (by my Gastroenterologist) who I saw today. He was excellent and has agreed to write to my GP to secure an injection every two weeks (my GP had said he would be happy to do this on the advice of the Haematologist). The Haematologist listened to me and actually asked me what I needed to keep me feeling the best I can. Amazing! He is also going to monitor how I get on. I have also been referred to Neurology so they can explore my neurological symptoms in more detail.

I realise that many people are suffering and I emphasize with this as it has been a long, long journey for me to get to this point and had things been discovered when I first started showing symptoms, I may not have the neurological problems I have now. I just want to give people hope. Joining the PAS was a big turning point for me as it provided me with the knowledge I needed to get to this point. Attending the PAS conference in December was also very informative, as was Martin's book.

I wish everyone well, keep going and have the strength to question things! Take Care. x

13 Replies

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  • Glad that you are one of the luckier ones who has informed and proactive medics on your side.

  • Yes, indeed. Although over the years I have seen some very unaccommodating Health professionals who made me feel even worse; one Neurologist told me to basically go and get on with my life! At the time I knew nothing about the B12 as I had been told it was ok because I was above a local threshold of 130 (it was 178 at the time). It was only five years later that on re-test (my request because of Gluten Intolerance) it was 115 and so I was told I was actually B12 deficient; all my reading and research then started. Needless to say I now have many neurological symptoms and I will not agree to see the previous neurologist again! :0)

  • So nice to hear something good for a change and well done you obviously did your homework and made your case very well. I just hope you never have to move house and change GPs.

  • I am actually due to move GPs soon, unfortunately, which is why I have worked hard on getting my treatment secured! The Haematologist is writing a letter to my GP to secure my two weekly injections and make sure I have it on my file. My GP has also agreed to write a letter to my future GP. I am trying to cover everything in advance! I just want to make sure I feel as well as I can, and can keep working until I decide not to, not the B12!

  • Good for you, it is very cheering to know that some of the publicity and work of The PA society is having some results. Well done to you and to everyone who reads all the info out there and goes to their GP and makes the case for more injections. You are right Joey4...there is hope out there!

  • Great to hear that haematologist listened to you.

  • Yes, he was amazing. I could not have hoped for any better, I am very fortunate.

  • Hi Joey4 Well done and thanks for telling us your good and encouraging experiences.

    I just have to ask - do you know what your Folate levels are?

  • Hello Clivealive (where has the 75 gone?),

    Although not considered abnormal, they were low. However, I had them checked recently and they had gone up a bit. I have discussed it with my Gastroenterologist and the Haematologist. I have to let you know, the only reason I knew to discuss it and question it was from reading your posts to others, so thank you. You have helped me a lot without knowing it. I have also had my two son's bloods taken (given my difficulties and the fact that I have relatives with PA and a number of autoimmune conditions) and both their Folate levels came back abnormal and B12 was low. They have had their bloods retaken following improvements to their diets to see if it makes a difference (they are older teenagers/young adults!) and we get the results this week. I actually asked for their blood results so I could specifically look at their Folate levels because of your posts - so thank you again!

  • Joey- blinding result! Well done.

    I've been sent to 2 gastroenterologists by my GP, neither of them showed any interest, couldn't have been less helpful and certainly did not examine me:

    - one suggested to my GP by letter that I might have IBS

    - the other one said that unless I had a stomach ache, he couldn't help

    .....GP said to me "Shall we have another try?" , I said "Let's not bother!"

    ( I have functional B12 deficiency at tissue level, with neurological symptoms- diagnosis a result of GP working with haematologist )

    - neurological problems included a scarey mix of what felt like autism and alzheimer's and luckily HAVE improved on 2 injections a week: it took a long while, I've been on this regime since October.

    Keep positive, keep a symptoms diary or chart, keep your lovely GP and keep in touch !

    Wonderful news.

  • Hello Cherylclaire,

    It is good to hear that you are getting there also and I empathise with the long journey; I have seen some very unhelpful Health professionals along the way. At the time I felt too ill to question them. I even started to question myself. It was only when I asked for my B12 to be re-checked and I had dropped below the local 130 threshold that I started to get clear answers for things!

    I will keep a diary, thank you for the suggestion :0)

    Take care.

  • 130 !! Glad I live where it's 197.... I can't see how I would have survived dropping that low. I guess that's when you get walking problems that are a bit hard for a GP to ignore, you would think.

    One of the reasons I keep a diary is so I don't have to struggle remembering dates, appointments, names etc. - all that effort recalling irretrievably lost stuff!

    Good that you got straight onto it with your boys- I think my sisters also need to keep an eye out, since lots of indicators in family: thyroid problems (inc. Graves'), psoriasis etc. Tried gentle persuasion, avoided nagging and in the end gave my sister my " Could it be B12? " book.

    Best of luck with 2nd GP: let us know how you and sons are faring .

  • Thank you and will do :0)

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