PA and pain

[Mono21]

Hi everyone. Sorry haven’t been in in awhile.

My PA isn’t getting any better. My numbers are still for vitamin B-12. I’m in do much pain. My feet hurt my hands sometimes feel numb. Can’t hold anything heavy because of the pain in my hands. My entire body hurts. Finally going back to the Mayo. I’m frustrated don’t know what’s going on anymore.

[Nackapan]

Hello.You mentioned numbers?

Have tou had recent bloods done.

Had more ruled out?

Are you having v enough b12 injectio s do you think?

I hope you can get some help. If not consider self injecting

[Mono21 in reply to Nackapan]

Hi. I’ve done everything. I also do self injections. The pain is just really bad.

[Cherylclaire Forum Support in reply to Mono21]

So sorry to hear you are in such pain, Mono21 . When is your appointment at the Mayo ? Tell them you are willing to accept a cancellation, if you are close enough to get there at short notice.

When you say your "numbers are still" for B12, do you mean they are low and remain low, despite frequent injections ?

What is your methylmalonic acid (MMA) level doing ?

Hope you are able to answer us.

[Mono21 in reply to Cherylclaire]

Good morning. My B-12 numbers are and have been between 73 & 79 for a long time now. My appointment at the Mayo is now in April.

[Cherylclaire Forum Support in reply to Mono21]

Whether ng/L or pmol/L that figure is so low, that I'm thinking this might be an active B12 serum result -not a total B12 serum result, which would measure both active (holotranscobalamin) and inactive (holohaptocorrin) B12. This would obviously be of little use to you, years down the line. There can be as much inactive B12 as 90% of the total.

If this is an active B12 level (HoloTC test): usually this is considered low if 35 pmol/L or less. It is unlikely to be low after injections (as it would be measuring what's been introduced) - mine is over 128, I think - which is probably the measurable limit and as expected because I self inject frequently.

If B12 is low, often folate, ferritin and vitamin D are not either at their most useful: really get these checked if not done/ not done lately. It can take a while to get all of these under control, and any of these could be adding to your pain. It certainly took me a couple of years.

If your B12 is there in blood stream but not getting to where it is needed (functional B12 deficiency) at cell/tissue level, then MMA is likely to be higher than it should be. The usual MMA range is 0-280 nmol/L. MMA needs to link up with B12 to move on to the next stage, hence the reason for it increasing quickly if B12 levels aren't adequate. Worth having this checked.

Despite my blood swimming in B12 due to injection frequency given, my MMA stayed raised for about 3 years after B12 treatment started. No reason for this was found, but it does mean that things can change even years later. That's really good news.

So I'm hoping your April appointment gives you some answers - and then some help.

[Mono21 in reply to Cherylclaire]

Thank you for the info. I’ve been struggling with low Vitamin-12 since 2010 but was never Diagnosed till 2012 with PA. Dr here in New Mexico couldn’t figure out what was going on till I went to Mayo. It’s been a rocky road but I deal with the pain on a day to day basis.

Once again thank you and hope all goes well for you.

[Cherylclaire Forum Support in reply to Mono21]

Hope they can help you. Pain every day - that's harsh.Perhaps you aren't getting enough B12, perhaps you have additional deficiencies or additional autoimmune conditions - all three even. Not uncommon with PA.

Let's hope they find out and you can get back on track with life.

Let us know.

[Nackapan in reply to Mono21]

Try and get more help.Tell the doctor you feel they are missing something.