Hi all just wanted to boast today about B12 the magical nectar. Am beginning to make progress with walking, standing, thinking, processes. Can’t mention B12 enough and how it’s bringing me out of a MS coma. I have Less tingles in my hands, feet, I can stand for longer than usually without collapsing into a heap. In fact I cleaned out a small kitchen cupboard yesterday, something I have been unable to do for god only knows how long. Anyway am hoping all the damage caused to my central nervous system improves, and I can at least walk again unaided without falling tripping or looking intoxicated. Am aware that not all damaged functions are reparable but willing to give it a try. Keep happy and healthy folks, B12 rules.
Immerging from an Multiple Sclerosis ... - Pernicious Anaemi...
Immerging from an Multiple Sclerosis coma.
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Margomck32
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clivealiveForum Support
That's good to read Margomck32
What frequency of B12 injections are you on?
Do you know what your Folate level is?
Replacing B12 will lead to a huge increase in (the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
I wish you well
.
Hi clivealive, I’ve done the loading doses of B12 over two weeks am now on weekly injections 1mg/1ml, about 5 weeks in total, commenced on folic acid 5mg daily, (this all done without a blood test). Iv been back and forth from GPS for years and never got any resolve. Even moved house and GP. I was a staff nurse and couldn’t get anyone to listen once MS was diagnosed. My iron levels where always on the low side, if too low ferrous sulphate given, or cobalamin tabs. then sent away. I believed the GP for years, oh what a mug was I. I started to sit up and notice after My daughter, who had 3 babies in 4 years and each time she nearly bled to death. She had started to suffer symptoms I had in the past and recently is undergoing Scans to determine MS.
After much research I sourced B12 ampoules, folic acid and decided to wing it. The list of symptoms I have are endless, the longer I am on my feet (2-5 min limit) the worse everything becomes. At times I can hardly hold my head up, and can sleep around the clock. I know these symptoms may take years to resolve, some might some won’t, but willing to give it a try.
I can’t get my brain to function as quick as I used to and thought dementia was setting in. So started B12 and folic acid, Some syptoms getting worse, but can live with that. Itchy skin, rashes, even spots, some on my head, I can handle that. Gave up all MS drugs, stopped smoking, improved my diet. Recently only stared to come alive again, can’t wait to see my outcome.
Ms society is where neglected long term B12 sufferers go.
You should perhaps post your "story" on the MS Community site - it's an inspiration.
I hope your improvement continues apace.
Thanks Clive I will post it on the many Ms sites am on. Be prepared to get hammered by request for information. Thanks again for all your useful information and links.
Hi,
Wonderful to hear that things are improving for you.
I hope your daughter's doctors test her b12 levels.
I wondered if PAS and B12 Deficiency Info would find your story interesting.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
B12 Deficiency Info website
Hi sleepy bunny I sent my Daughter to her GPS with a list of bloods to be checked, just in the off chance because I had my suspicions. B12 Results where the same as mine in the past hundred years lol, a bit on the low side. she was commenced on folate and ferrous fumerate. This is her second lot of meds since the birth of her last child. If she haddent gone we would never had known the outcome. I always think if you’ve had a baby, had to get 3-4 units of blood after and iron tablets they should follow you up with regular bloods for 2 years. Well not in this case. Meantime she has followed me and commenced on B12 loading doses. By the second injection she could feel improvement and starting to have more energy, and pins and needles in hands have gone. Although it’s still early days for me, I will continue with the injections and hopefully further improvement. Then I will tell the world on Facebook, MS society and anyone else that will listen. So far my friends and family are sick of hearing about B12.
"I will tell the world on Facebook, MS society and anyone else that will listen. So far my friends and family are sick of hearing about B12."
So are my family....hopefully we can start to change things if everybody on forum passed B12 info to a couple of others.
So glad to hear your daughter has improved.
"second lot of meds since the birth of her last child"
Have you looked into effects of nitrous oxide on B12 levels? Nitrous oxide is in gas and air mix used as pain relief in labour and it can inactivate b12 in body.
Nitrous Oxide
gov.uk/drug-safety-update/n...
More info about nitrous oxide and pregnancy in B12 books listed below.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Hi sleepy bunny, yes know the effect of nitrate oxide, and scared for our future generations. If we all tell 10 people and they tell 10, do you think some one will take notice. Lol if they think it doesn’t affect them no one gives a shit. Sad sorry world...
I know that feeling!😏😂🤣🙋🏼♀️
That is so wonderful to hear! I'm so happy for you!
How many others are there out there who are suffering needlessly? How can we get the word out?
Hi blogsy2 it’s early days for me, I will give the B12 injections more time to hopefully improve my symptoms further, then my next port of call is an aunt in her 70 that has had pernicious Anaemia for years. She gets three monthly injections but always tired, and has all the symptoms that I have suffered, I also told her last year that it sounds like MS. Am now convinced that MS society if where the forgotten or mis diagnosed PA suffers end up. Lol once I see further improvement in her also, al post my story on Facebook, The many Ms sites am on, and anywhere else I can get away with. Hopefully it will encourage people to push for further investigations re PA. My next appointment with my MS consultant is Aug, boy he will get it in the neck big time. I sometimes feel if they give you Meds to take home with you, they think they’ve resolved your problem. The MS meds I was taken, cost thousands, only certain Specilist can prescribe them, they where toxic to me and caused more problems than they where worth.
It’s shocking B12 cost pennies and we could cure, repair, resolve many many problems if only caught in time. And save the NHS and insurance companies millions in the meantime. Rant over.
Who says they want to save money? Sick people (healthcare) is a huge business and creates a big pile of jobs. I think they secretly hide some stuff that can actually cure or help us for cheap to sell their expensive drugs and treatments. The big pharma are not any better then the big companies selling sigarets.
Hi Geckowacko I here you loud and clear, it’s the same with cannabis, there will never be a cure for cancer, well not legally. All because chemo has massive profits to the pharmaceutical companies that sell it. Have you noticed in the last few years Boots the chemist are buying up all the little chemists and taking over the drug monopoly in Britain. They should give me the job of running the country, with B12; cannabis, the odd paracetamol, aspirin, and antibiotics, I could cure all ailments and be high in the process. It’s a scary greedy world we live in.
"my next port of call is an aunt in her 70 that has had pernicious Anaemia for years. She gets three monthly injections but always tired"
Perhaps your aunt might find it helpful to join PAS?
PAS (Pernicious Anaemia Society)
Based in Wales, UK but has members from around world.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
If your aunt is in UK and has neuro symptoms , my understanding is that she should be on injections every 2 months. See links BNF and BSH Cobalamin and Folate Guidelines links below for more info on Uk b12 treatment.
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
i am not medically trained.
Thanks sleepy bunny my aunt is auld school, can’t work a computer and will take a bit of persuasion to confront her GP about increasing her B12 injection. But me being a determined person and starting to get my mojo back I will be on her case very soon.
Hi Margomck32,
This is so wonderful to read! Just had to say well done you and reaaaally wish you the very best! Just what I needed today...so inspiring 
Take good care,
Drumstix
Thank you so much B12 rules...
Taurine can help repair nerve damage. My low pitch hearing loss, caused by nerve damage, likely low B12, improved within 6 days. Worth a try.
That’s good, Iv had tinitis for years, that seems to be occurring less. B12 rules......
Try also magnesium oxide for hearing and tinnitus issues. I know of three people recently who have had their tinnitus cured just by this and they were about to go for surgery (!)
Hi saya85 thanks, am taking methionine 500mg, it’s a amino acid and has magnesium in it, so think that should be suitable. Al be a vitamin junkie be4 long and doing cartwheels. Well hopefully.
Lol I know the feeling. I’ve just taken 8 before bed. But they (and b12 in particular) have been life changing. I can actually do cartwheels now!
Oh please stop boasting your making me jealous.
Fantastic news! I hope your improvement continues, and your daughter also. It's not just MS. Think of the poor souls wrongly diagnosed with dementia. So shocking.
Absolutely it’s shocking what the outcomes of B12 deficiency are. Am scared for our future generations.
I am so with you on that one Tricot....well done to say it! xX
Just wanted to say I hear ya Margo...same here I was heading for a wheelchair...sent all my blood tests over the past 20 years to a quite famous B12 knows his stuff doctor (don't think we are allowed to say names on here) he diagnosed me in an instant with P.A low B12, undertreated thyroid, and low bottomed out cortisol, and is advising me what to do, he said I was heading for a wheelchair with a MS diagnosis, so it looks like I will be self-injecting too....eeeek! wonderful to hear your story xX
Brill that you had a dr like that to help you Katherine, keep his number on speed dial, after this we all might need his services lol. Remember everything gets worse once you start taking the injections as the nerves begin to emerge from their coma, but all of a sudden you’ll start to notice small difference here and there. Good luck, flood yourself with B12 as it rules.
I have already been taking 15,000 mcg of sublingural B12 a day, and the pain in my feet when they started waking up from their numb state, so painful... feet still in a numb state though :0/ I had ataxia and was falling over and bumping into things, that has improved slightly, numbness crawling all over my head and body...I had 50 different symptoms all in all :0/ so thank you for the heads-up I will expect the pain again....no pain! no gain! :0)
Good girl, keep us all updated on your progress.
Hi Margomck32.
I was diagnosed b12 deficient at the age of 19yrs medical advice given at the time was to eat brown bread and drink sweet stout!!! I too have MS and I have a real hangup about having this label as far to often Drs blame anything and everything saying ah its your MS causing this.
It was a German neurologist at the MS clinic many years later who got me my diagnosis of P.A after running some blood tests.
I don't know if anyone mentioned about watching your potassium levels since you are loading with no blood tests. GPs usually advise eating a banana each day when loading doses.
Good luck and hope you do well. xxxx
Hi Kay yes one banana a day with B12 all vitamins and a healthy diet.
Me again Kay 19 and diagnosed with PA, I have never been diagnosed with PA, it took 16 days in hospital and a visiting neurologist asked me what I thought it was, he ruled out every thing else then asked me what do you think. Thank god I was a nurse at the time, told him it must be MS as my sister had it, and I had been having symptoms for years, but could live a normal life with them, so ignored them and went about my life. Lol sometimes I think what type of nurse was I...... but I know I was a good nurse to my patients, they all loved me, it was just the establishment and their protocols that would make you think oh there’s nothing wrong with you. Then the bombshell of MS set in, I was being referred to a specialist MS consultant, ok I thought al be back at work and walking normal again with no symptoms in 3-6 months. Boy was I wrong it took 9 months numerous trips to my GP before I seen a MS specialist. Then commenced on meds that where toxic and had terrible side effects, but big daft me said al keep taking them 30 months later I said enough is enough. So now on a blind quest and winging it to prove them all wrong. Am still laughing at the brown bread and sweet stout protocols. Keep healthy and happy.
Many many people like myself think/know they have been misdiagnosed with MS and it is actually b12 deficiency. Do you think this is what has happened to you?
Hi toph I certainly think so, only because I did some reasearch on PA and it’s got more detailed symptoms, which relate to me, than the MS sites. To let you understand my younger sister has MS, she was the first in the families history to be diagnosed (25 years ago) i have an aunt in hers late 70 with PA, diagnosed years ago. When I told my aunt about my symptoms she said I’ve got all of them as well. Made me stop and think, MS and PS must be related, so with all this knowledge in the back ground, I started to think, wait a minute, my daughter had 3 babies in 4 years, nearly bled to death in 2 of her deliveries, had units of blood to bring her levels up. She had symptoms, ie pins and needles in hands, feet, tiredness, ect ect but put it down to having 3 small children and working part time. She also is in the process of MRI scans, lumber punctures to determine MS. I also have a nephew recently diagnosed with MS only because he recognised my symptoms and went to get tested.
I now think MS is the final diagnoses after a failed long term mis diagnosed B12 deficiency. So by getting my daughters B 12 sorted, then my symptoms hopefully improved With B12, my aunt is the next on my hit list. Once she makes any improvement then onto my nephew. Hopefully we will all show improvement before I see my MS consultant in August, then al hit him with the facts. Everyone with these symptoms should have extensive test for B12 deficiency, then rechecked possible 6 months later to determine is it B12 deficiency or MS.
Remember this, Multiple sclerosis means many (multiple) scarring/liesons (sclerosis).
I told my consultant right from the start of it, if this is MS it’s not RRMS is secondary progressive because Iv had this for years but all minor stuff, that I ignored and got on with my life, until it hit me like a ton of bricks. The laughable thing is he keeps waiting for new/different symptoms to occur be4 he diagnoses the second stage. Told him theres nothing left in my body to have new syptoms, every part of my body is affected. His answer was no you could go blind.
That was it for me, wait to am blind be4 you change my diagnosis. So told him stop all meds, and injections as they don’t work, they caused more skin rashes and illness than the MS, he then sent me for further scans to see if there where any ongoing active liesons on my spine.
So at the moment I really can say since I started the B12, amino acids, iron tablets, folic acid, potassium (daily bananas) vit D, healthier eating and stopping smoking, I starting to feel better although I’ve got a long way to go.
Although every syptom gets worse as the cells, nerves begin to wake up, Am beginning to come out off this MS coma. Brain fog easing off, sensitivity to light eased off, blurred vision eased off. I can stand more than 5 min with collapsing into a heap, some pins and needs gone in my toes on one foot. I don’t choke on food anymore.
My legs and balance are really bad today so hope it’s a sigh that there going improve a little tomorrow. Time will tell, but l will keep on with my regime for a the rest of my life, hopefully every symptom goes and I can get my life back on track.
Hi again,
Thought you might be interested to know I read that B12 deficiency can lead to white matter lesions in brain.
I searched on internet for "B12 deficiency brain lesions" and found some interesting links.
Sleepybunny your a wealth of knowledge, 6 different MRI scans, brain, neck, thoracic, lumber some with contrast medium some without, all showed numerous brain and spinal cord liesons. I have research a bit on brain scans and leisons but to complicated to get to grips with. I will have a look at the B12 defiency info on white matter. Many thanks again.
I was diagnosed with MS 10 years ago and reading what I have read and taking B12 injections daily for the past six months I can honestly say that there is something going on with the NHS
have you ever heard of Dr chandy he is a 77 year old retired GP he has done lots of research on B12 and is a great believer in the fact that Ms is not a real condition and it can all be attributed to chronic B12 deficiency I know other people who have been diagnosed with MS they are trying helplessly to get this ridiculous diagnosis reversed as Dr chandy says this situation is caused by the mafia I know it's a bit unbelievable but there is definitely some organised crime involved with this
I will tell you something and it might shock you did you know that B12 was discovered by GLAXO in england and a very famous American University the name of which escapes me presently
Surprisingly to the best of my knowledge B12 vitamins are not available easily in the USA or United Kingdom you can get it from I think all European countries apart from the United Kingdom most countries in Asia australasia Russia it really stinks to high heaven
Americans have it bad some European countries won't post B12 which is a harmless vitamin to the States possibly due to the fear of legal prosecution so Americans have to get them sent from Canada if possible
Hi toph yes came across Dr Chandy and his marvellous work, didn’t know about the discovery on B12, it’s shocking how they control drugs. I’d say the mafia is big pharma and there many hangers on.
How do you feel after taking B12 daily. Do you feel your symptoms have improved, if so by how much.
Did you have any side effects with flooding your cells with B12.
there are no side effects whatsoever taking B12 it is a water soluble vitamin so if your body has had enough you would just wee it out
My advice to you is to not start injecting B12 until you've had this simple and obvious test look up viapath they have a lab at guy's and St Thomas's Hospital in London B12 active test costs £40 the B12 serum test undertaken by the NHS is useless to pay the money take the test and hopefully you will be able to go back to your doctors and tell them the outcome
Good luck
Hi toph am too late, story of my life lol. Wish I had know about this before. I started the B12 injections 5 weeks ago and now taking them weekly, I was aware that there was no serious side effects, but didn’t think I could take them daily. I have side effects of itchy skin, and small bumpy spots over my scalp. When I take the injection they flare up, and within a few days they start to disperse before the next injection, but can live with that. Thanks for all your valuable information it is most appreciated. What about your MS do you have any symptoms of MS or did they all go after you commenced injection. Iv had them for soooo long I have a fear of not repairing all the damage done.
Are you sure it’s MS?
neurologyadvisor.com/multip...
Hi fbirder had all the MRI scans, Lumber puncture and according to the medical profession yes MS. However according to B12 depletion and my own unprofessional opinion, I generally think, if you have a B12 deficiency long enough you will get liesons on yours spinal myline sheath resulting in Ms and or a whole host of other nervous system problems. My opinion is the multiple sclerosis society is where you go when your PA or B12 has been misdiagnosed.
I'm interested to learn how you are doing now as you sound similar to my brother who has M.S and Pernicious Anaemia?
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