Pernicious Anaemia

[PurpleParis]

Could anyone give me an indication of what to expect concerning my partners peripheral neuropathy caused by PA? He was numb from the waist down and from his elbows to the tips of his fingers. He has now been loaded with B12 and just finished his last weekly shot and is now not due for another until mid Sept. The neuropathy seems to be changing from numbness to tingling...is this normal? Does this mean that he is going to recover from the neuropathy? We were unsure, as the Haematologist said that he has never seen levels like his and has used him as an example, teaching nursing students, of how this could have been missed. He thinks he may have been like this for up to five years, so we thought that maybe the damage may be permanent, although the neuropathy only started last November. His homocystine level was 270, I believe it should be somewhere between 60-99. Does anyone have any idea if this could be permanent, is there ant test we could have done to see if it is permanent?

[sqad617]

The only peripheral neuropathy that can be totally reversible is B12 defy neuropathy.

It is likely that he will recover his nerve funcion completely.

There are tests for muscle function and the Dr.may suggest them, although a "wait and see" policy might be better.

Good luck.

[PurpleParis]

Thank you Sqad for responding so quickly....we are tearing our hair out here as no one seems to be able to tell us anything and he needs to get back to work, as I was made redundant and he only gets SSP. No one seems to be able to say....well it could take one month...six months....twelve months. We are just desperate not to lose our house, although we are losing our minds!

[sqad617]

Purple....i do sympathise AND understand, but believe me it will return but obviously can't say in terms of 4months...6months or whatever.

[zbearspirit]

My wife has it and never recovered totally she is better than she was but still has bad days..she gets her b12 injections and trys to eat healthy and keep a moderate lifestyle ..She has tried several things but unfortunatelky she too had it a long time and some nerve damage didnt repair.

[PurpleParis]

Hi Zbear, can i ask....how long did she have the neuropathy before she was diagnosed with PA?

My partner went to the GP in November saying he couldn't feel his hands and was told it was probably carpal tunnel and to go back in February if there was no improvement. He went back the last week of December because his feet had joined in, even after two stays in the neurological ward of the hospital we had no diagnosis and it was only when he then got a DVT, due to the immobility that a completely different doctor asked how long had he had PA! We were gobsmacked as it is so easy to resolve but like you, if left too long the damage could be permanent, He is an engineer so cannot do his job, we are at our wit's end.

[zbearspirit]

Hi in answer to your question it was about six years, my wife was angry that it was not diagnosed sooner and although she had various symptoms over the years the doctors failed to identify it. She has been left with nerve damage in her foot and back that flares up from time to time.