My brother was told 20 years ago he had M.S. I don't know if they tested for b12. Retired lovely famous Dr. C has spoken to us and thinks its sub acute degeneration of the spinal cord due to the untreated b12 deficiency.
We are self injecting Methyl b12, every other day if I am not working, I have to do it as my brothers one side is withered and he can't use one hand or leg....horrifying to think this could all be a vitamin deficiency. He loses heart that he is getting any better. I try to gee him up and say it's a slow thing to happen as well as to heal.
He can't have any b complex or folic yet as it causes him to have insomnia all through the night and therefore bad headaches and nausea and get even weaker.
He had plenty of scans years ago, MMR's etc. and was diagnosed by symptoms as he didn't want a lumber puncture as it was very painful when he had one during a bout of Meningitis....sadly he refused. Lesions on the spine and one on the brain. I'm coming into this late as he was married and I didn't go to the appointments....so trying everything a bit blind now but I have seen the low b12 blood tests and he was only given folic acid which disguised things.... so sad for my brother.
His Doctor is very resistant to going down this route and was very horrible to us. He said he didn't have a b12 problem just because our father had Pernicious anaemia and he didn't know why nothing was done when the B12 was down to 153 many years ago and low scores since....refused the Hollo test or the other definitive tests as they were too expensive. He wrote in the consultation notes that "this consultation has been the most exasperating" in capitals! I pushed J into there in a wheelchair how did he think that felt, J walked in last time! No empathy.
My other brother has had M.S for the same period too...twenty odd years. The NHS has spent many thousands of pounds on expensive new drugs treating him but he's just as poorly as J. One of their daughters diagnosed with it too, she's only 30yrs. If this is really only b12 deficiency it's terrible to think it's so misdiagnosed? I have Sally's Pacholoks book too and read out bits to my brother as he can no longer concentrate to read and try to give him hope.
When will someone compare and study this....Sally says that perhaps the two are the one and the same problem?
Thanks for all the great advice on here, and heartwarming support from special people.
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Marymary7
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Hello Mary, I was diagnosed with MS twenty years ago and have been prescribed very expensive drugs. Since taking the drugs ( Beta Interferon, Tysabri and Tecfidera ).
2014/2015 I became very poorley, my GP did blood tests and found I had low b12 and large red blood cells so she gave me 6 injections over 2 weeks and I felt much better. I'm Prescribed 1 injection per month but that isn't enough so I buy my own from Germany and my boyfriend injects me every other day Intramuscular.
I'm not taking any MS drugs and haven't for the last year or so and feel a lot less fatigued. I often wonder if MS was the wrong diagnosis and how would I have been with b12 injections.
Drs really need to go down the b12 route before prescribing drugs that in my opinion make you worse.
Carry on with shots and and hopefully he can start to take the cofactors soon.
Thanks@TAB100 for the help. Glad that you are healing. Yes my other brother had the same super expensive drugs as you they cost many thousands and don't help, he's on another one now which also is used for Alzheimer's and loss of mental faculties called Ebixa or similar...no help so far.
Hi Marymary7. Just want to say I'm really pleased that your brother is now having B12 injections...after all this time!
It's truly shocking to see how your brother has been treated (or rather not treated) over the years and the reaction of his GP is unbelieveble (to put it mildly). To say that he found the consultation 'exasperating', and write this in the medical records....well, words fail me on that one (at least words that I can write here).
His GP has been negligent...over and over again...and then again.
The widespread family history of PA would also, like you, make me wonder about the MS diagnosis for the second brother.
I'm really impressed by the way you're doing everything in your power to help your brother try and regain his health...and I applaud you. It's emotionally and physically draining taking on such a role so please make sure you take care of yourself too 😀.
Reading out Sally Pacholok's book to him is truly inspirational.
You have both been much on my mind ever since I read your first post and I know everybody here will be thinking off you and looking out for your posts...
I sincerely hope that your brother starts to benefit from the B12...even the smallest improvements will give him hope that more will follow...and make it much easier for him to accept your frequent stabbing activities.
Take very good care both and we look forward to hearing your updates...and, of course, post if your need further help or advice...or just to have a good old vent.
Thank you for your heartwarming words Foggyme , kindness personified.
Yes retired Dr C said my brother has been severely neglected for twenty years....but he said that J can get 80% better in his opinion so I keep reminding J of that.
I research this all the time and my problem of underactive thyroid too, I think I get on my brothers nerves when I read out back up info of why I want him to take D3 and K2 for example. He says the K2 was too expensive (had one pack) and knows not to take the D3 on its own so not taking that at the moment, I need to find some reasonable price but quality supplements....more research....which I love luckily.
We are having all sorts of problems with accommodation and money help for him, I don't know how someone so poorly on their own is supposed to handle all this stuff....he doesn't need any more trouble but it's very problematic at the moment. Money is tighter than ever after his burglary and no insurance.
The main problem has been his lack of sleep with the jabs but that is easing without taking the co factors for the present time, also I work Thursday Friday and Sat so cannot help with jabs on those mornings so not enough continuity really. It will be amazing if his hand starts to work again and he could SI . I start work early and J is very slow in the morning so no squeezing a jab in the timeframe available for me. Just hope we get there in the end if we plough on.
These are D3 + K2 tabs I used Mary, that proved so effective that GP said vitamin D test was the highest result she'd seen all year.🙂They come in various quantities and very reasonably priced:
Re. thyroid, I agree with Foggyme - GP is completely irresponsible to advise coming off thyroid meds. Having had bad experiences with various GPs over the years in misdiagnoses and ignorance of thyroid issues, I now buy my own NDT and regulate own dose - far less stressful all round as, like many, I only feel well with very low or suppressed TSH. Dr Tofts' book, 'Understanding Thyroid Disorders', published in association with the BMA, is very helpful:
"There is considerable debate about the correct dose of thyroxine. The consensus is that enough thyroxine should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable."
You probably already know that thyroid problems and PA/B12 def. are often interlinked, with leaky gut/intestinal disease the source, and I believe this is at the bottom of all our own family autoimmune/thyroid/B12 issues.
Very best wishes for better treatment for you and all your family Marymary x
Thank you so much for the reply and advice Polaris . That's a good sounding supplement too, thanks for putting me onto that, I'll get it for J and me. I have read that the Mk 7 version of K2 is the best and I'll get that one with the D3...
I don't have that book although I do have quite a few....one has to in this process! Wonder if the library can get it for me to save spending more.
P.s I forgot to say that all my brothers blood tests were ok regarding the possible liver damage from long term use of painkillers. His folate and other important stuff was at good levels but the B12 was still only at 700 after loading doses and more.
Hi Marymary7....you'll love this...have you had your B12 levels checked...lots of cross-over symptoms between B12 deficiency and thyroid conditions - the two often go hand in hand...and then there's the family history...😖😀.
I could dig out old bloods results, I have not been to the docs for years, I just keep getting a repeat thyroxine script on auto....I can't go, he said I should come right off my thyroid meds as my levels were too high...I cannot function and work without them so I havnt been back. The dogma and attitude with our thyroids is as bad as the b12 deficiency problems.
Foggyme you are probably right, my b12 was 439 in 2013 when I was seeing a specialist who said I had probable ME . It's thyroid and b12 then with no help expected from my GP.
Oh good grief Marymary7....on the balance of probability and family history....B12 deficiency and PA!! Very often misdiagnosed as ME. Or CFS. Or fibromyalgia...and you know the rest. Sadly.
And yes, treatment of thyroid issues is as bad as treatment for deficiency and thyroid.
Can you change GP. Certainly, get B12 and anti-Intrinsic Factor tested. And MMA. And homocysteine. And folate, ferritin, FBC...and a full thyroid panel. So many and's...
For thyroid, ask for referral to an Endocrinologist if your GP won't do a full thyroid panel (you need thyroid antibodies as well)...but I expect you know more about thyroid than I do).
I just can't believe it..how unlucky can one family get...just hope you don't all have the same GP. Though many more - most - are just as bad!
Oh marymary7, just shout up if you need any more help.
Let us know how it goes and please take very good care of yourself 😀😀
P.s. Forgot to say....brother's serum B12 level needs to be above 1000 for neurological repair to take place (some say 1500). So keep at it 😀😀
And here's more forgetting...
Your **** stupid GP can't just stop your thyroid meds simply because your levels are too high...thyroid meds are finely balanced and they have to be just first for,you to be and keep well (and oop, I nearly said a night word 😖).
When you have results of your thyroid panel, post them on the Health Unlocked Thyroid Forum. There are some very knowledgable folks there and they will be able to give you good advice about diagnosis (since your GP doesn't appear able to) and what treatment you should be chasing.
Very best of luck Marymary7...my heart really does go out to you 💔💔❤️❤️
And you have all the information you collected on your brother's behalf...go armed!
Thanks for the kind words foggyme. 😀I wrote a reply last night but the page crashed and off it went!
I supplement myself with NDT (natural thyroid) and by chance b12, b complex and lots of other supplements I know are important. So I dare not see the doc and have bloods taken because it would not support my cause! I feel well at the moment except at work under a bit of pressure I may get brain fog and that's difficult. I know if I take more thryoid I'm clear thinking but I worry about that so dare not....I keep trying to get a good balance of everything.
I saw an endo years ago and he was worse than my doc and was no help and then the fatigue specialist who said it was probable chronic fatigue syndrome and could only offer me cognitive therapy some 30miles from home and as my brain is not in need of training to convince me I'm not ill I could not see the point.😳
So I manage on my own, I eat a healthy diet, go to yoga, work half the week and walk my neighbours dog and do anything I can....read lots!
Good news I can see my brother is improving, he is much brighter and happier although there is no improvement in disability yet I can see this B12 therapy is working and it's definitely the way to go.
maybe you could getsome advice or do a gene test to prove that he is not absorbingat cell level
Marymary7 Don't bother with looking into genetic testing. There is no such thing as testing to prove if you're absorbing at the cell level.
There is, however, a blood test (well, two actually) that can prove you are absorbing at the cell level, or not.
Methylmalonic acid (MMA) is a chemical that is used up in one of the reactions mediated by B12. If there isn't enough B12 in the cell then MMA doesn't get used up, the levels of it rise and show up as high values in a blood test. Problems with the kidneys can also cause high levels in the blood, so a high result would need further investigation. But a problem with the kidneys would be worth knowing about anyhow.
The other such chemical is homocysteine. But the test for that is more complex and expensive, so you're more likely to get the MMA done.
My brothers doc wouldn't do those tests, I asked much to his annoyance and he said no, too expensive, because he is so blinkered about the ms diagnosis.
I'm not going about me just yet as I'm managing.
Thanks for the brilliant advice though, this site is a godsend.
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