Does improvements continue

[MarvelDC]

Hi everyone, hope your all doing well….

I’ve quite new to this forum and only posted once before, I am 6 months into my b12 deficiency treatment, and for the same reason as everyone else I know self inject once every 2 weeks which seems to work for me…

I have definitely noticed an improvement in my symptoms over the last 6 month, but it is early days in my treatment so I know I have to be patient….

my question is, is there any research that indicates how long improvements continue to take place after an injection…

So if I have a hydrox injection, will my body on a cellular level continue to use my increased b12 levels to heal my body until I have my next injection 2 weeks later…..

Or does healing only last 1, 2 or 3 days after an injection, until I have my next one….

Thank you for any replies in advance, I know this is a difficult question to answer… but it’s always something I’ve wondered about 🤔

[OldmanD]

it seems no one is the same.. . . . . . Personally 3 monthly was not going to do it for me. . . . At 5 1/2 weeks after loadings I was back with GP who gave me 3 more jabs a week apart. . . . . That was a roller coaster so I knew I'd never be weekly either . . . . . But again everyone is different. . . . . Your healing could continue for some time . . . . . I had sciatica for so many years and it disappeared after a while but I dont remember how long that took. . . . . Before B12 I could barely get enough co-codamol 15/500 to keep me going . . . . . Thank goodness I was not addicted to them. . . . . . . I havnt had sciatica for at least 2 years if not 3 and I dont miss it . . . . . I can but suppose myelin sheaths managed to get repaired. . .. . . . You do need to keep your other co factors I think many call them well up . . . . More of less all the B vitamins work hand in hand so one gets low and inhibits the performance of others . . . . . Just google Vitamin B? defiency symptoms on each seperate one and it'll give you an idea. . . . . Some are not easily tested for . . . . Keep up D3, C and mag/calc. . . .

[MarvelDC in reply to OldmanD]

Thank you for your reply OldhamD, yes I have definitely improved my diet lately, I’ve been eating a range of different fruits, veg, meats and dairy products, I’ve had regular blood tests, and alot of my levels have improved including folate, ferritin, vit D and b12.

And that’s interesting, over the last year I’ve had sciatica symptoms, pain in my left hip that radiates down my leg into my foot, I’ve found it’s improved over the last 6 month with b12 injections, exercises and stretches, I am under physio just to rule out anything else, but I’m assuming it’s b12 related

[OldmanD in reply to MarvelDC]

I had to do "the stretches" physio showed me every morn and sometimes afternoon also. .. . . If I sat and watched TV it would be awful.. . . . . It really made life a misery. . . . . I havnt had to go through those performances since. . . . .

[MarvelDC in reply to OldmanD]

It’s great to hear you’ve recovered from it…. How long did it take for your sciatica to go away after starting b12 treatment??

I hope there comes a day in the near future where I can recover from it, I find it’s worse when I’m standing still….. wish there was a way to heal nerves quicker 😓

[Nackapan in reply to MarvelDC]

I have great difficulty standing on the spot still.Can walk alot further now.

I'm 5+ years in and still making gradual improvements .

It was never a quick fix . I was told this early on by a neurologist.

Advised to keep up the b12 injections and coukd take years.

Although disheartened at the time ,he was right.

I did start at a very low point with progressing symptoms undiagnosed and was told ;

Life

Stress

Anxiety

The menopause

Depression

A finale of nasty falls

Then a collapse.

Onl6 then was B12 was finally tested along with full bloods and a brain CTthen MRI.

So I imagine why such a slow painful recovery .

If caught early treated early the outcome is better .

B12 is not on'standard' bloods

That was my first ever one done .

The only thing that showed up wrong severely deficient was B12.

Medics have no idea how drastic the symptoms can be.

They spent more time trying to find something else wrong .

To date nothing else to treat!!

To date still have a 2 weekly prescription.

To 'open their eyes '

To keep me as well as can be

To be recorded on my notes .

[grumpyold in reply to Nackapan]

Please can I ask you a quick question about the brain MRI you had? Did it show cerebral small vessel disease (white matter) changes? The only reason I ask, is because I am currently trying to get a B12 deficiency diagnosis and the MRI I had of my brain for a suspected TIA 2years ago, showed I had these small vessels dying off. If this can be related to lack of B12, it's another argument I can use to help plead my case.

[Nackapan in reply to grumpyold]

I did have white lesionsAlso T2 flares

And other changes.

I also had a few falls due to a diagnosed b12 deficiency!!

One hitting mh head hard on concrete .

The Mri report quite Involved

I had it repeated a year later including neck.

It showed my brain had 'settled

I think they were ruling out tumours and said if was 'clear '

Their words

'Nothing sinister found '

And changes expected with my age ??

I was in my 50s when both done .

A neurologust did mention delymylation and cerrabella damage.

Dismissed by another .

3 neurologists had very different opinions .

So all in all.

I don't know.

So not sure it will help your case.

I trialled tablets but didn't work for me .

I've an absorbtion problem 😕

So need b12 injections for life.

[grumpyold in reply to Nackapan]

Thankyou for replying. Its so demoralising when so called experts don't agree and have differing views. Glad you are now getting your jabs for life.

[OldmanD]

Standing was awful, perhaps the most painful thing of all. . . . . . . I could not go anywhere ye'd have to stand such as funerals etc. . . . . It really was painful. . . . . . This is going to sound daft but I honestly cannot tell you how long it took. . . . .. . . It was certainly several months but less than a year . . . . . It was wifey who caught on first and ask me about my back and only then did I become aware that was in no pain and hadnt been for X . . . . . She just asked, is your back not sore any more, your a whole lot straighter the last while . . . . . Many might think I should have noticed but it happened slowly. . . .. I do remember my "stretches" being less needed but I do not remember the last time I performed such. . . . . It was not something that I was thinking would be helped by B12 jabs. . . . . . I had read about the sheaths being repaired/recovering but simply did not put 2 + 2 together .. . . I am really thankful though. . . . . . B12D symptoms and all that goes with it, . . . . . COPD/Asthma and sciatica all together were quite the handful to contend with. . . . . At present my chest is not really bad but I have to use saline in nebuliser twice per day to keep the mucus moving. . . . . . . Hence you'll see my comments often about hydration. . . . . . At my age dehydration is an all too common problem. . . . . . B12D symptoms really are at a minimum but 4 years in I still havnt learned everything. . . . . I see some who considder that extra exertion can raise the need for more B12 and I tend to agree but I really have only began to pay attention to such. . . . . I dont like making changes often and when I do I either change back within a few days of continue for a couple months before deciding on anything .. . . . . I did swap my jab to evening a week or two back but gravitated quickly back to morning again . . . . . . As we dont store or I certainly dont store B12 any B12 used up is gone . . . . . Some years ago I was in a half way house I think where I could lets say eat/supplement myself better but that only lasts a little while until we stop absorbing pretty much all together. . . . I'd imagine those who are having success with large doses oral will be similar to myslef and some day it will simply not keep up with the needs. . . . .

[Darkvarnish9 in reply to OldmanD]

That is very true, I've been taking 26 tablets a day. I needed to keep taking more, while trying to persuade my doctor to give me jabs. I wrote to my MP, the other day I had a reply, he had contacted someone, and the answer was....see your doctor. That was it, I sent for the injections, my partner and I watched the videos. I couldn't do it myself but he bravely stabbed me and done. Why did I wait so long? My A.Fib and pins and needles haven't returned. Burning hand and feet are still on going, as is the tinitus. But I have only had two injections so far. I am very hopeful that I will clear up my other problems soon. Don't hesitate go for the injections, if you have someone nice who will help or are brave, unlike me 😃

I look forward to telling my doctor that he was wrong....again.

Best of luck everyone! Thanks for the help and advice, couldn't have done it with out.

[Cherylclaire Forum Support]

For me, it took a long time for any improvements, and a lot of injections.

Having had no response at all to the loading dose (6 over 4 weeks) then deteriorating further once on the maintenance dose (1 every 3 months), I had my MMA checked. Because it was raised despite the B12 injections, my GP diagnosed functional B12 deficiency. This condition means that there is a problem with B12 not being transported effectively to where it is so desperately needed; cells and tissues. The MMA is there to enable B12 to reach these areas, and will build up if the link is not made. (Also if no B12 is available for it to link with !)

Treatment was then 2 injections a week (as near to every other day as they could get) and it was only then that I saw improvements. So did my partner, friends, family, employers and workmates... and my delighted GP. It still took three months at this frequency to begin feeling when the injection had been done. I no longer had to ask before putting on my jacket. Progress was slow and not always linear.

For example: an overambitious lockdown project during a hot summer introduced me to foot-drop - which I noticed because I suddenly could not clear the back step when coming in from the garden. I'd managed that back step easily for 40 years ! I also tripped over the raised vegetable bed I was making and did not feel/ notice that I'd cut my leg. This cut looked like a bullet-hole for months ! Nerve damage, numbness and poor healing ability.

Had to remember to keep my knees up ! Luckily, I was not stuck walking like Ronald MacDonald for long.

After about 6 months, my injection frequency was dropped to a maintenance of 1 injection a month. This I found impossible to manage. It was then that I started EOD injections and it took a couple of years for me to be able to reduce this. I now have two injections a week and usually cope with this routine - unless very busy, very stressed or after an illness. More is required temporarily then, for me.

I would take noticeable improvements over the last 6 months as a very positive sign that more is possible.

We are all different - why wouldn't we be ? We became ill at different times, approached the GP at different stages of our illness, with serum B12 levels that differed, with symptoms that differed, had different severity and frequency of those symptoms and different reactions to treatment - so why would a B12 injection every 3 months be the correct frequency for all of us, no matter our age, height, weight or accompanying health conditions ?

We don't even know if we all have PA or not, since there is no definitive test. Still, where else would we go ? Welcome to the forum, MarvelDC !

Wishing you well.

[Oneash]

Lots of us are on every other day. In his book, Martyn Hooper says it takes as long to recover, as you have been going down hill. I have felt various stages. First blood and oxygen, then feeling like my organs have had a spring clean 1 by 1, especially my liver. I think my kidneys are still at it, or just coping with the fall out. Now my brain is having a good old toxic chuck out. My skin keeps getting better then worse again.

I'm 6 months into getting enough, I function most days now, even occasionally feel something like energy! Saturday was a zombie day, until I forced myself to do something in the afternoon.

So yes, Martyn says 3 years in the book I think.

[MarvelDC in reply to Oneash]

Yeh it’s a hard journey, it would be lovely if we could see the nerves healing, it would make the recovery so much easier…..

Due to large amounts of stress in my life which has now improved, the beginning of my recovery was very hard and slow, but recently I’ve seen an increase in my improvements, I experienced for many years hair loss, my ankles went bald, and hair on face, eyebrows and head fell out, thin and light…..

My hair has got darker, thicker and had started to grow back, which gives me alot of reassurance that things are improving and starting to repair….. sometimes seeing is believing ☺️ I’d like to think the healing process continues between injections, as long as b12 levels are kept high