How long before your improvement from b12 shots plateaued?

[addie18]

Greetings:

I know I have read that damage from b12 deficiency can be permanent if not treated within 6 months. My question relates to a slightly different subject: how long did you get b12 shots before you felt like you stopped improving? How long should I expect to wait before I consider residual symptoms as permanent? Some people have told me a year, but I am not sure what that is based on? As for me, I experienced a large amount amount of improvement immediately after I started getting b12 injections, but now after a few months I don't see much further improvement. So is that it, I am stuck with my remaining symptoms? So I was just wondering if anyone would share their experience so we can compare anecdotes.

Also, a closely related question: After you started the b12 shots, did you experience exclusively improvement, or was it ever a "two steps forward, one step back" type of progression?

[Gambit62 Administrator]

I was told that I was B12 deficient in December 2012 when I was hospitalised with a broken ankle. I had loading shots. I went for maintenance shots - noticed absolutely nothing from either (though also true that I had no idea what the symptoms were so may have been improvments but I just didn't notice them. It wasn't until I had my 3rd loading shot - and I had done some reading up (no support from GP who seemed to know nothing) that I actually noticed any difference - got to about 4pm in the afternoon and was still going strong after shot in the morning.

It wasn't until 6 months later when I started treating myself with really high doses that I really started to improve - in fact many of my symptoms had been getting much worse since treatment had started - and that was the point at which I went from struggling to walk to being happy at the top of a ladder pruning my grapevine in 3 weeks and 3 months later I realised that the anxiety and depression that had dogged me for 40+ years have gone.

There are still some 'symptoms' - feeling in my left foot is impaired and I have some problems with carpel tunnel syndrome - I still have mild tinnitus.

I've experimented with different doses, different forms of B12 - different forms help me with different symptoms - mild incontinence looked like it was going to be permanent until I started adding some adenosyl into the mix.

Most medics just have no idea how individual responses to B12 are ... and the majority are totally unaware of the possibility of a functional B12 deficiency (high levels in blood but little or none available to cells) which seems to be a key factor in my initial treatment and recovery.

[ritario in reply to Gambit62]

Hi Gambit62, the part of your post which has me baffled is the 'I went from struggling to walk to being happy at the top of a ladder pruning my grapevine in three weeks'.

I can walk but with difficulty - this being attributed to nerve damage and to be honest, I cannot think of any other cause (aside from temporary damage like a broken bone) Being a rather impatient person, I have researched nerve healing/regeneration and found the accepted pace of healing to be 1mm per month? Have I got it wrong??

[NJMommy in reply to ritario]

I had very extensive nerve damage. I as well began to see improvement quickly, but you probably won't see the final results from nerve damage for 18 mo to 2 years. My neurologist told me early on that nerve heals extremely slowly and I had to learn to be patient. Good luck and feel better!

[Bentleymuree in reply to NJMommy]

Your post has given me a little hope! I have now been on my pokes of B-12 for over 3 weeks. A little better, but not much.

My numbers were 333, which I thought was pretty much normal. I do have stomach issues, so there's a possibility I don't absorb the vitamin well. My anxiety has been terrible, I hate that feeling. I wake up every single morning feeling yucky, been going on for a month now.

Still get that electricity feeling in arm and some tingling (pins and Needle feeling). My motivation is terrible.....

So here's hoping things get better, I want to feel like me again...

Thank you again for your post!

[NJMommy in reply to Bentleymuree]

The pins and needles/electricity you're feeling could be your nerves healing, I had and to some extent still do sub acute spinal cord degeneration. When I first started treatment, I had these "episodes" of feeling like I'd been struck by lightning. The nerve pain was so bad my doc put me on Gabapentin which really helped. The fatigue, emotional, and certain other symptoms will take a bit to subside. All the bad blood cells have to die off and be replaced by the ones that are healthy. I was told this could take a 1-3 months. I didn't get diagnosed early enough to see a full remission of symptoms and I probably won't. But it does get better with time. Just so you're aware, my b12 was 103 at the time of diagnosis, my methylmalonic aside was over 34,000 (yes, that number is correct) and my homosistyne was over 300. I hope your diagnosis didn't take as long as mine did.

[addie18 in reply to NJMommy]

Wow, those numbers seem really high! (except b12.) Sorry to hear you went through it but thanks for the info. I never had my MMA tested. My homosistyne was considered slightly elevated, if I recall correctly I think 20 on the scale they used for mine. (My b12 was 110) In retrospect I think I may have had symptoms for years.

[NJMommy in reply to addie18]

I was probably sick for years as well. At the end, I was bedridden and had been diagnosed with everything from Guillian-barre to ALS to MS. I don't know where you're located, but for future reference if you don't have the HoloT (which they don't test in the US), the only way to make sure the b12 is actually getting absorbed properly is to test both MMA and Homosistyne. Always insist they test both.

[addie18 in reply to NJMommy]

Wow, you were really diagnosed with all of those things? Do you now think that b12 was the explanation of all of it, or a portion?

[NJMommy in reply to addie18]

Like most of us who are diagnosed with true PA, I have other health issues as well. I'm told that I am textbook. All the symptoms that led to my diagnosis are from PA.

[addie18 in reply to NJMommy]

Dear NJMommy: thanks for the info. I guess my biggest worry is that I have 2 things -- PA and also MS or CIDP or something. In retrospect, I probably had low b12 for years, because it has really helped with mental health symptoms I had for years before I was diagnosed. But my neuropathy is overall the same at best after 3 months of weekly b12 injections, and it came on much more recently. Did you ever have any treatment for MS or ALS? At what point did you become confident that all your symptoms are due to PA and not one of the other conditions? Prior to knowing it was PA, Did you ever try any treatments for MS or ALS and did they have any effect? Just curious, easy to lose one's mind over these symptoms.

[NJMommy in reply to addie18]

Hi Addie, I never had treatment for MS or ALS. Before his final diagnosis my neurologist did a spinal tap to rule out MS. All the other lab work, IF, antiparietal cell antibodies, MMA, Homosistyne, etc came back perfectly to diagnose autoimmune pernicious anemia. He said between my symptoms and my lab work I had a true textbook case. There was never any follow up for ALS because B12 injection had caused change immediately. Unfortunately, so many of these illnesses share symptoms that it makes a diagnosis difficult. I just got really, really, lucky to have found a neurologist that refused to give up on me. Good luck, and I hope you feel better!

[gg317 in reply to NJMommy]

same with memory and cognitive function? 2 years is a long time to get it back but at least its hopeful.

[Gambit62 Administrator in reply to ritario]

My struggles with walking were to do with balance issues - which wouldn't necessarily be down to nerve damage in terms of the nerves involved in the motor action of walking - though I certainly found that trying to walk involved a lot of effort and concentration to get the muscles to do what I wanted them to do. It may not necessarily be the local nerves that are causing the problem - signals can get scrambled and not get through straight in the brain - which is what I think was going on for me.

Not a biochemist or a biologist so couldn't comment on rate of repair.

[scorpiojo in reply to Gambit62]

I've had the loading doses made up by me and 4 given by gp.. Over say 10 weeks and my energy is still bad... Trouble i have is what's causing what and treating what first... Is it the other vit defs or adrenal or thyroid... I'm not patient either... Big hugs all.. X

[ndodge in reply to scorpiojo]

Hi Scorpiojo,

Forgive me if I've asked this before but how is your ferritin level?

I was iron deficient as well as low on b12. So between the two I was exhausted.

I started the methyl and iron supplements at the same time so I can't determine which did what but all I know is that getting both iron and b12 up made me feel like a new person!

I sincerely hope you can figure out your fatigue problem. Being fatigued all the time feels just terrible.

Take care. xx

[scorpiojo in reply to ndodge]

Ferritin 34... 😊 range I believe is 20 - 150 but my reading 34... I have my reading's on many of my posts... X I take gentle iron from Solgar....

[ndodge in reply to scorpiojo]

Hi Scorpiojo, that's a good iron capsule. That is what I took. My doc said to take 2 a day, even though the bottle says one a day. My iron went up to 75 in about 7-8 months.I felt a lot better.

Checking out people's posts are a good thing to do so the same info isn't asked and answered! I keep forgetting that I can do that.

Thanks! xx

[scorpiojo in reply to ndodge]

Not to worry... I don't mind answering hun... Gentle iron by Solgar seems ok... I do take one but might take two then... See it helped me 😊 x

[ndodge in reply to scorpiojo]

once your iron level gets up, I am sure that will help with the fatigue. The very best to to and your continuing road to recovery!

[Caro44 in reply to Gambit62]

Your anxiety & depression from 40 years improved? Really? Then there is hope for me. I am 43 and my anxiety and depression got awful about 25 years ago and reached the unable to function (just pace the house) started 11 months ago. I will happily accept some anxiety and depression, but some relief would be awesome. thank you.

[Gambit62 Administrator in reply to Caro44]

sorry to hear that you are suffering so much from the neuropsychiatric symptoms.

Before discovering that B12 was my problem I did find that meditation helped me as a coping strategy.

possible that you might find this post interesting/useful

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I had ferritin levels of 3 before being diagnosed with iron deficiency anaemia. Have been taking ferrous sulphate for 4 mths. Ferritin is now 44, but GP says she would like it to be 100.

I had B12 levels of 118, but told I was within normal range, but have numb and tingling feet, which I have had for over a year, had no idea what it was. Persuaded my GP to give me 2 weeks of loading doses, but it has had very little effect. I also have palpitations and funny breathing.

GP wants me to have another blood test. It is now a month since my last injection. I know it is pointless to have a blood test as levels will be up, but will not tell him anything. Have had no PA tests. Am wondering whether to ask for referral to a neurologist, or ask for more injections or more tests. I don't think he really believes I have B12 deficency, and thinks its my age (70).

How long can you have loading injections for before deciding it's permanent