Asking those who have healed -

[Blinkysmom]

Do you just wake up one morning and all of a sudden you can walk straight, have energy, etc.?

[Penni]

I wish it worked like that. It doesn't help that my nerve damage has caused so many other issues with my feet and lower legs means that walking is now always difficult and at times very painful. But the way I look at it now is that this time 3 years ago I almost died because of a former GP with holding my b12 injections and spent 5 weeks in hospital. It took a long time to recover. I have been left with issues but I'm still here and can walk (with support).

[topazrat]

Nope. Slow but sure improvement day on day, month on month. But still get the odd day where everything tingles and twitches, I'm cream crackered and feel totally out of it - like yesterday. But that was my own fault for walking the Cornish coast paths and swimming everyday last week!

[Ajane in reply to topazrat]

Oh this gives me so much hope. I have had to give up all the exercise I used to enjoy. Can I ask please, how long since you were diagnosed?

[topazrat in reply to Ajane]

I was diagnosed formally last November and started jabs, but I had been ill for over 25 years. Boughts of anemia, constantly tired and dizzy, numbness, tingling, all the usual stuff. The Docs totally missed it because I'd been taking supplements for decades, which skewed the test results. It was only when the penny dropped and I asked for an I.F. test that it was found finally.

But, I'm my own worst enemy in a way. I refuse to rest unless I really can't stand up. I can feel exhausted and jelly legged and I just ignore it as best I can and carry on - not that I'm advocating anyone doing the same. Many on here would probably call me foolish for what I do. I do pay for overdoing it sometimes though because I really don't listen to my body when I should!

[Ajane in reply to topazrat]

Thanks for your reply. It's a difficult balance though isn't it, between listening to your body and trying to live a normal life doing the things you enjoy. I guess it's maybe down to how quick recovery is after overdoing it. I have only just started out on this journey, and yet to see improvement, but you have encouraged me that I may one day feel well enough to attempt to live a little, even if it takes a while 😀.

[Gambit62 Administrator]

wasn't a wake up one morning thing

can still get symptoms coming back if I don't keep my levels high - will notice myself getting grumpy if I haven't had enough B12 .... and can grind to a halt - will feel off balance ...

I did notice improvements over time when I managed to get my B12 levels where they need to be for me. Balance improved in a couple of weeks and then noticed mood was more stable a few months later - took longer to get feeling back properly in foot. Still get phases of carpal tunnel playing up.

[clivealive Forum Support]

I sometimes have "better moments" but not all that often

[Frodo]

For me it's like a gradual upward curve (if it was seen on a graph) but with lots of ups and downs, sometimes there's a day where I feel almost completely ok, then a bad week may follow when I can even doubt the treatment is working. But looking back, there's overall improvement, especially mentally with brain fog, confusion etc. I had a period of intense, debilitating disappointment/depression when I realised I will never get back to how I once was, so still having to work through that, but then I've had untreated issues for a very long time. If you caught it early and got treatment in time, I should think there's more chance of a recovery as you describe.

[kirsten555]

I'm the same as Frodo - mostly on an upward curve, but with setbacks and dips along the way. I tell myself the B12 is working its magic somewhere in my body where it's needed, and try to stay positive. I'm five months into treatment (self-injecting alternate days now) and wish it would all hurry up, but I've read people saying it can take a couple of years.

[Frances55]

Hi guys....my name if Frances and I was diagnosed with PA with neurological involvement 4 weeks ago....my doctor has sorted it in the respect that I can have my injections every other day....and after this Fri I'll be able to self medicate (injections)....I must admit my only symptoms at the time were fatigue and emotional outbursts....but after a bit of research into PA.. I realised I had been suffering mild bouts of pins and needles, confusion, low moods, cognitive impairment and a bit shaky...I finished my loading doses on Monday...and have started my every other day today...I'm still a bit up and down...with some times having three days at a time feeling great and back to my old self... I only hope that I've caught the neurological side of it in time to reverse it....it's all a bit new to me...and not very straight forward...how long do I keep taking the jabs every other day for???.....the guidelines say until there's no more improvement...do I have to stop injecting to find that out????....or will it be apparent whilst I'm injecting????...plus I have the dreaded acne😱....any advice would be greatly appreciated....cheers guys😄

[Sallyfr in reply to Frances55]

Hi Frances, it might be worth posting this as a new post instead of a reply or it might get missed. I am still finding my way with this and only got the loading doses so didn't get the opportunity to cntinue every other day. I do keep a diary though of symptoms so that I can check my progress. I am on jabs every other week at the moment as a pilot and I am steadily seeing improvement. This is getting reviewed in a few weeks tough so I am keeping my fingers crossed! I have seen other posts where advice has been to trial going a bit lnger between jabs and see what happens so that you can find what is an appropriate regime for you. I would repost though as people on here know far more than me, I am still navigating my way through it!

[Frances55 in reply to Sallyfr]

Thanks sooooo much for your feedback.....I don't know how too repost...in fact I'm not sure where I am on this forum...but I'll try to find my way...I really hope you feel better soon if that's possible....after reading some posts.... I feel quite ashamed I suppose that at this moment although I don't feel great..there are people out there that are suffering soooo much...like I said I don't know much about it right now ...and I'm usually the type that helps..as opposed to needing it.. I hope it all works out for you sally....xxxx

[Sallyfr in reply to Frances55]

Thanks Frances, I feel better now than I have for years so I know the b12 is working. Just need to convince dr I need it more than every 2 months! She is really good though so I feel lucky. Regarding reposting, just go to the top of the page and you will see a smiley face that says click here to write. Click on that and it will bring you a box up that you can write in to start a new thread. Hope you get sorted. Sally

[Sallyfr in reply to Frances55]

Lol, just seen you have posted! 😀👍🏼

[Frances55 in reply to Sallyfr]

Aww thanks Sally... I'll get there ☺... Xxx