New here, but not new to PA. Back on loading doses after GP thought a break would be a good idea!

Hi, I'm recovering from 6 months of continuingly severe neuropathic issues from lower leg pain, burning feet, numb hands, to upset tummy, disturbed vision, tongue spasms, balance problems, fainting and confusion as well as urinary incontinence. All led me to be suicidal before recommending B12 injections gave temporary relief. Continuing to improve on loading doses, but worried about permenant damage to my nerves and in a bit of shock about what happened to me and having to fight for NICE/BMF treatment of every other day until no further improvement. Nearly finished second week of 3 injections a week. GP now agreed to let my friend, a retired nurse inject me at home. Hoping this means they will let me continue loading until improvements cease.

So that is me! Hope you are all having a good day. 😊

4 Replies

oldestnewest
  • Hi MaybeMoody have you had your Folate checked?

  • Hi MaybeMoody. Really pleased that you're beginning to fell better having started the loading doses. And very impressed that you managed to stand up to your GP and get them.

    Your B12 alternate day until no further should most certainly continue - until you say there is no further improvement. Many GP's wrongly assume that if blood levels are high B12 on that regime the intensive B12 treatment is no longer needed. How ring they are.

    If your GP tries to reduce the frequency of your injections, the link below will take you to a document that speaks to the potential necessity to continue with the intensive regime for up to two years (some people need that amount permanently to remain well and keep the symptoms at bay):

    stichtingb12tekort.nl/weten...

    As always, what counts is the symptoms - if you have still have symptoms, or they return before the next injections, then you need more frequent B12 injections.

    About nerve repair - this can often take quite some time as nerve repair happens quite slowly. Some here continue to report continued improvement for a very long time. So don't despair - you might not feel it quite yet in some places but the B12 is doing it job and busily repairing all those little places.

    Also agree with clivealive. B12 and folate work together so if your folate levels are low then your body can't utilise the B12 properly. Many doctors think that levels that bump along at the bottom of the reference range are good enough. They're not. Folate levels need to be in the top third of the reference range.

    Very good luck and I hope your health continues to improve 😀

  • "not new to PA. Back on loading doses after GP thought a break would be a good idea"

    Do you mean that you were diagnosed with PA a long time ago then your GP stopped your treatment for six months and you suffered severe neuropathic symptoms during the six months without treatment?

    If that's what you mean I'm shocked. I'm hoping i've misunderstood you.

    In UK PA treatment is lifelong injections of B12. I think Martyn Hooper of the PAS would be interested in your story.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Stories on Martyn Hooper's blog that might be relevant.

    martynhooper.com/2016/09/23...

    martynhooper.com/2016/04/24...

    I'd suggest reading the following if in UK

    1) BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate Deficiency" should be on page 3 or put "coballamin and folate guidelines" in search box.

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

    Unhappy with treatment?

    Link about writing letters to GP

    b12deficiency.info/b12-writ...

    NHS complaints

    citizensadvice.org.uk/healt...

    HDA patient care trust

    HDA pct is a UK charity that gives free second opinions on medical diagnoses and treatment.

    hdapatientcaretrust.com/

    I am not a medic just a person who has struggled to get a diagnosis.

  • Hello, no, I'm trying to educate myself about folate! 😊

You may also like...