Young PA sufferer, advice needed please

[Jcwg]

Hi, I would just like advice on whether I have told my daughter the right thing. I Buy methyl privately, my daughter is 22 and was diagnosed with PA soon after me in 2013, she is mostly tired all the time, looks very pale and her memory is not good, her GP gives her hydroxo every 12 weeks. I have advised her to start Buying methyl privately.

Is she better to start supplementing now?

If so, does she need to be taking it every day like I do for neurological involvement or less regularly?

[Gambit62 Administrator]

It is really difficult to see someone else suffering - especially a relative and to be honest the regime for treatment in UK is pretty Naff. Definitely better to start aggressively early rather than leaving it - if things are left too long then permanent damage can occur - not sure if there are any cases of that happening to someone who is already receiving supplementation or if that just keeps you in the land of the undead for ever. My own experience was one of symptoms seeming to get worse whilst on normal regime. I now supplement (mainly using a nasal spray) at rate of 3mg a day (rather different from 1mg every 2 months which was what I'd manage to persuade the doctor to put me on. Things improved dramatically for me once I started on that - and I was using hydroxocobalamin at the time - in about 2 weeks after nearly 18 months on the normal regime.

B12 Deficiency isn't a one size fits all disease so bit sad that the treatment tends to be.

Best to let her GP know she is supplementing and to add a little folate into the equation as well ...

[Poppet11 in reply to Gambit62]

It happened to Marre, Gambit.

Marre was receiving 3 monthly jabs for 5 years but her condition continued to deteriorate - albeit probably more slowly. She then got her degenerating symptoms investigated and they diagnosed sub acute. Increased her injection frequency but it still wasn't enough and she still self medicates in between.

[Jcwg in reply to Poppet11]

Thank you for your replies, it's not easy this PA! I've ordered some books for me and my daughter to read, hopefully it might help us understand a little bit more.

[Poppet11 in reply to Jcwg]

As long as you understand when you read the books that PA or b12 deficiency is not a blood condition - it only 'sometimes' manifests in the blood (even if the anaemia is clinically apparent)

The DNA dysfunction comes first.

[Hidden]

Hi,

Ideally she goes to GP to get blood test to make sure she is not now also possibly deficient in folate and or iron, and or thyroid issues, at her age iron def is very common, and becoming folate def during B12 treatment is also common, besides problems with thyroid etc. Unfortunately once diagnosed with an autoimmune condition it is possible (but not necessary) to get more autoimune conditions. If these test then do not show up a problem and your daughter wants to try more frequent B12 then try, see what works for her, but we all are so different, what works for one may well not work for the other.

I hope this helps,

Kind regards,

Marre.

[Jcwg]

Hi thanks, I do understand that, I'm trying to educate my daughter as well as my mam,,who I am sure has b12 problems too after many years of symptoms, tho her b12 was 280 so they avent treat her as such, she has recently had an anaesthetic so am trying to persuade her to go and get it tested again, I will be giving her the books to read when I am finished with them. My daughter takes folic acid, iron and vit d tablets daily, as these were on the low side when she was tested for PA, I already have Ankylosing spondylitis, so she might develop that 2 among many other things. I think it would be wise going by your comments for her to supplement and see how she goes with it.

Many Thanks