Pernicious Anaemia

[chloeg91]

hi there,

I have recently been diagnosed with pernicious Anaemia at 25 years old. I had pretty bad neurological problems with numb legs, feet and later on hands. I have just finished my loading dose B12 course and my feet and legs have dramatically improved however my hands, especially my right are still numb.

Do you think it will just take time for the nerves to heal?

Has anyone else had these problems? Did they take time to recover?

Thanks!

[clivealive Forum Support]

Hi chloeg91 It is not unknown for symptoms to appear to get worse before they get better once your B12 treatment starts to heal the damage done to your nervous system so the best thing you can do is not to worry about it as stress uses up B12.

Do you know what your Folate level is as this is needed to process the B12?

I was diagnosed with P.A. 45 years ago following gastric surgery 13 years before so I was very much like a staggering Zombie and was threatened with a diet of raw liver three times a day - or - B12 injections... I chose the injections

Be assured, there is life after P.A. you just need to be a patient patient and get your doctor to give you the treatment you need with regard to frequency of injections. Sadly it is not a well understood illness by many GPs.

A good book to read is Martyn Hooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" which can be got on Amazon.

I'm not medically qualified but I am still "clivealive" at 75

[chloeg91 in reply to clivealive]

Hi Clive,

Thank you for getting back to me! My folate levels and iron levels were normal so I assume there is no problem there? Although does it hurt to take extra folate?

Im am told I need to have injections every 3 months now, although my Dr is aware that as I have Neuro problems I may need them more frequently.

I use the b12 spray daily and have also just ordered some of the lozenges as I have heard these can also be beneficial?

[clivealive Forum Support in reply to chloeg91]

Folate is "used up" processing the B12 so it probably won't hurt to take 400mg of folic acid a day (from any chemist).

Glad your doctor acknowledges that you may need more frequent injections - that's good. I had to "fight" for years before mine would agree but I've got there at last.

I wish you well for the future.

[chloeg91 in reply to clivealive]

Thank you for the advice, I shall purchase some of that as well.

I came prepared to my appointment with a folder of information, I don't think he dared to ignore me!

All the best to you too

[Marz]

I think the Guidelines state that you should have regular injections until the neurological symptoms subside. Also you may need more regular injections than every 3 months.

Take a look at the Pinned Posts to the right of this post - lots of good information. Also fbirder has put together a whole load of important references for people to access - so click onto his name for the information - or PM him.

Your Folate and Ferritin levels are best around mid-range. Sometimes Docs do say they are fine even when they are bumping along the bottom of the range.