Would b12 heal other neuro conditions? My story of symptoms

[Owensemm]

Hi all. Im new here so hoping someone can advise.

Ive had neurological symptoms from the age of 15 mimicking progressive MS. Ive also had neuropsychiatric issues, always had episodes of an erratic fast heart day to day, continual headache that sent me to the Drs for MRI scan at 19 because it was that severe, and continued and im now 30. At the point i discovered b12 helped i was suffering ataxia, unable to walk, unable to string a sentence together, delirious, confused, gasping for breath, suffering neuropathy, incontinent, shaking with an internal tremor, deep depression and years of paranoia, some delusions, and altered consciousness. Too fatigued to move ( couldn't even speak a full word it was one syllable then rest and pause) and uhthoffs phenomenon.

I begged gps to do something and they botched a neurology referral on 2 occasions, cold and callous one of the drs i spoke to and i was told they couldnt do anything, couldn't comment on my symptoms or situation, nor the one neurologists refusal of the referral put in twice (both failed to inform me that i was refused help, so currently its been a year and counting i was left suffering & now being placed on a waiting list again)

In March 2020 i had collapsed basically on the stairs with the headache and gasping before the neuro symptoms worsened where i ended up paralysed, disorientated and bed ridden, unable to fight for myself anymore and the obstructive behaviour of the drs.

By December i started using b12 and folic acid patches, and vitamins. I was able to walk within 10 days and 15 years of a severe tremor was the first thing that abated (was so bad i couldn't lift my arms to apply makeup or hold a mascara brush and i was in tears from the burning pain and quite frankly scared, deep depression and fed up in life being so disabled and refused help)

I then started self injecting b12. Last resort really.

The ataxia has reduced, but i have weakness in my whole body and legs, some sensation returned. Notably taste and smell upon injections being less dampened, hot and cold sensations on my body and face

I stopped gasping for breath badly after about 2 months. I still have days i flare

Again the gps have been nothing but obstructive, refused to send me my blood test results and told me they were normal.

This is ongoing matter, i have issued a complaint against the neurologist that basically left me to die, when i could no longer fight for myself, and the gps appalling response.

I'd like to know if im responding to b12 injections and it had healed my ataxia, crippling tremor ( but not other things - im still fighting for my life which is not an overstatement)

Does this mean b12 deficiency has been the issue all along? More than likely?

Im not gasping for breath anymore, or waking up gasping, i feel like im getting oxygen now

Or does it heal other things such as (neuropathy, MS, CIDP) and its just masking another condition? Does that happen?

From what i understand b12 injections do not repair MS or get people walking again.

I have had neuropsychiatric issues, fast heart, feeling faint, brain fog and fatigue, irritability and severe headache constantly for 15 yrs, and these arent indications of certain neurological illnesses. But i found out b12 d can cause this.

Also my MRI of my brain at 19 & 27 was normal. I would have thought this means its not MS after this amount of time. No spinal MRI has ever been done.

I've been nothing except let down by drs and having to continue b12 injections. I dont know if I'll always feel this ill or genuinely brain damaged ( neurogenic stammer is improving now) memory loss isnt

Severe neuropathy isn't clearing up its still happening, but i started injections in December. I dont have diabetes that might cause it. I think some of the burning lessened (could be neuropathy lessening ) and certainly the ataxia, but the cognitive problems have not improved they've worsened i have a memory of about 2 seconds and couldn't finish my sentences about a week ago and frequently forget who i am and where i am i used to have epidodes of it over years and now its I forget i even have relatives its that bad and cant even engage in normal things or react

I felt like a zombie when i did the first injection i didnt even flinch, thats how bad my cognition problems are

Im just wondering if its likely a b12 deficiency im suffering with?

Thanks for reading x

[Nackapan]

I'm very sorry you are so ill.I've a daughter that was also treated the way you have been . It took years of pushing as gps were quite frankly useless and long awaited referrals had no answers.

Gps however are the Gateway to specialists.

B12 deficiency severe folate deficiency and megobalastic anaemia for her was as the root of alot of her problems.

It took a general hospital medical doctor in a and e to take an interest.

As despite brain MRI ect b12 was not tested !!

I finally stepped in and went with her to the Gp to get a referral to The National Hospital in London.

Tour condition is complex so needs the specialists at the top if their game

So in short

B12 will support your nervous system and definitely worth doing.

It aides recovery with brain I juries .

I'm hoping you've had all the blood test investigations to rule things out.

Try and focus in moving forward

Push for more referrals.

Take someone with you.

Get help in clearly stating in a letter what you are asking for.

I personally at this stage would leave any complaints until a later time. Put your energy into healing.

It can be counterproductive.

Very very wrong i know but just get seen.

MY daughter has in the past been left collapsed outside a hospital and didnt make it in!!

Left outside a surgery and ignored as unable to move.

I dispair at how many people will walk past.

Ignorance and fear.

So so glad you posted.

Time to write an action list with help.

Have you ever had a b12 test . ?

Keep strong and keep going.

Get copies of blood results too.

400mcg of folic acid daily is recommended at your age .

As is vit d in the winter.

I hope you get a diagnosis and a treatment plan soon.

Take care

Keep us updated.

More I'm sure will come along with links ect

Can you start afresh with a new Gp?

[JAJ61]

Like you my neurological symptoms began as a teenager. from the age of 12 I had fits which were treated with anti-epileptic drugs but were stopped in my late teens. All through my life I suffered from myoclonic spams which prevented me from driving, going to concerts where there were flashing lights or being in any situation where there were parallel lines. My memory began to deteriorate ten years ago and five years later peripheral neuropathy and a leg that refused to lift up to walk sent me to a neurologist who said that I probably had MS but it was moving very slowly. He suggested I check out my Vit B12 levels as they were at the lower end of the range. My GP organised an injection and five days later I had feeling returning to my fingers and I could walk. This lasted 10 days and all the symptoms returned. I had an injection every four weeks for three years and was stuck in a horrible mental and physical cycle of having an injection and hoping that it would work, joy when I could walk again tempered by the knowledge that it wasn't going to last. Then crash as ten days later I was left with a leg that dragged and altered sensations in my fingers and toes. But the one thing that didn't come back were the epileptic symptoms.

What I hadn't really noticed was the brain fogging, lack of concentration, no short term memory, hair thinning and fatigue. I kept asking for the NICE regime of an injection every other day until the neurological symptoms had gone but was told that I was not B12 deficient and that my reponse to the injections was atypical and more than likely just a placebo effect. My GP said that she could lose her license if she was caught giving more prescriptions than NICE allowed. The neurologist was not even impressed that, after suffering for 45 years, I was free from epileptic spasms.

Each month the effect of the injection began to be reduced and more symptoms developed. I began to stammer and have problems swallowing. So I began paying for extra injections but the practitioner only delivered them on one day each fortnight and it was a 2 hour round trip to get them. Then lockdown came and the technician closed her practice. This spurred me on to begin self-administering every other day and I have now had forty shots. Slowly but surely my body is repairing. As my leg began to move properly I had severe pains in my hip. My GP gave me a referral for physiotherapy and the specific exercises have really helped with the pains. I still don't sleep well at night because of the neuropathy but my concentration is so much better. My hair is thickening out and I no longer stammer.

Keep going with your injections but request physiotherapy from your GP. My physiotherapist has never seen me but sends me exercise by email following a telephone consultation. This is obviously not ideal but, even so, I can feel the difference. I also found that taking folic acid made a difference.

I have no expectation that the NHS will be interested in my condition as NICE has blocked the use of VitB12 as a general therapy for neurological diseases. They state that there is insuficient data to suggest it works. There will be no research into How Vit B12 works or who it works for as it is a cheap and readily availble supplement that would not pay back the research sponsor.

[Cherylclaire Forum Support in reply to JAJ61]

There is current research : The Pernicious Anaemia Society is involved in research to determine why some people manage on the routine NHS frequency of 1 injection every 3 months and some clearly can't. Well no-one else is going to do it, are they ?Have a look at the PAS newsletters for more information. Nothing lately - but early indications were that they were definitely onto something !

[Bellabab]

So sorry to hear of all your problems due to B12 and the appalling lack of treatment or even some empathy from the medics. I have a similar story - I suspect that I have been B12 deficient for possibly 40 years. Result was treatment resistant depression and anxiety that has severely effected my life and relationships. I have been self injecting every other day for almost a year and the depression and anxiety has gone as have many other symptoms. Keep safe and never give up.

[Retteacher]

I would recommend reading Dr Chandy's book sold on Amazon. He reports that some patients who have been wrongly diagnosed as having M.S. can benefit from B12 . If you write to his patient group charity he may even respond to you personally with kind advice.