Pernicious Anaemia Society
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B12 newbie potential MS?!

Hey all,

So my story started 2 years ago with all types of neurological symptoms, vertigo, nausea and vision problems. Finally after many dr visits I got told I have low b12- 220ml they started me on weekly injections (only wanted to give me three) but symptoms got worse at first so I ended up having 9 all up. Symptoms finally disappeared (not completely) levels went to 925ml then then send me on my way. Three months later symptoms started again but with pins and needles and numbness in my arms,legs and face. Went for tests results were 350ml- 'normal' they said. Reluctantly started me on injections again but want to do every 3 months. Now off to a neurologist for a MRI and dr mentioned MS. Any advise or help on this topic?!? No IF antibodies present. But feel like my levels shouldn't have dropped almost 500mls in three months. GP says 'normal'

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I'm not sure what that is? So I assume I haven't had it.

Thanks

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part of neurologic testing, when they scrape the bottom of your foot, is often an indication of upper neuron issues indicative of ms

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Oh yes the neurologist did a full physical examination which she said everything was good.

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well, thats great news!

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Yes! She is still doing an MRI and a few other tests. I'm hoping it's just b12 but she doesn't seem to think so.

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do you have brain fog/memory issues?

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Yes, constant memory issues and brain fog

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O, well..guess that's one reason why. Ive had neuro issues for many years, very similiar to yours but at 8 years ago. i had my shots and seem to get hopeful when they were weekly nut when they went monthly, I lost hope. I failed the babinski test 2x, but seem to have better balance after my b12 therapy. but I have the same arm pain/ numbness you have but since I have no improvement , im guessing my dr wants a brain mri, but hasn't really mention ms. I would like to hear more details of your story...

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Yeah it's frustrating app dr's have a different opinion the neurologist doesn't even think I need injections. My MRI isn't until Jan 13th so a long time to wait. Just finding the whole experience draining and invisibly worrying. No one seems to know anything about b12. And treatment varies depending on country.

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were you vit d deficient? Do you have any days where the brain fog seems lifted? are you feet feeling freezer burnt? numblike tingling fingers? raynaulds? rapid heart/pulse? difficult breathing? family history?

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No family history . I get shortness of breathe, pins and needles in feet and hands, chest pains, numb nose and bad nausea and vertigo- some days are better than others. The heat seems to make my symptoms much worse. I'm only 34 so life sucks at the moment

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And weird like vibration in my head

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tinnitus? i mentioned that to my dr, he said no cause, no worry.

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what does dr say about the nausea? I never heard of that being a low b12 issue, been nauseous for the past years or is that something new for you?

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Yeah she said it's not a common symptom. Maybe that's why I'm having an MRI? But when I've googled symptoms nausea is common as the intestines/stomach is responsible for b12 absorption. Who knows though? The injections stopped the nausea straight away!

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I had a break from it but it came back when my shots ended. Is it an ms symptom according to your dr?

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ms can have relapsing symptoms? oh dear lord, think that may be whats going on?

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No. She didn't know what the nausea was about. She didn't mention it's an MS symptom either. But the injections helped so I put it down to B12

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i did too, until my neurologist said otherwise...

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guess we shall see

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Nausea or vomiting that is most severe in the morning, gradual loss of movement or sensation in an arm or leg, unsteadiness or imbalance, confusion and disorientation and memory loss are some of the symptoms of brain tumor

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If you have Pernicious Anaemia ,the antibodies attack the parietal cells which produce Intrinsic Factor and stomach acid . Both needed to absorb Vitamin B12. All PA patients have low or no stomach acid as a result (Hypochlorhydria or Achlorhydria) This affects the stomach flora adversely . Hence the nausea. Taking good probiotic eg Symprove , can help . Or make your own probiotic foods (organic sauerkraut eaten raw ) This is cheaper and better - google for recipes )

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Thanks for the advice I tested negative for the Intrinstic Factor antibodies. Hence why they don't think it's PA. But I'll give anything a go ;)

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But you do know don’t you that the IF test is notoriously unreliable? Our chairman Martyn Hooper tested negative at first . SYMPTOMS are the most important indicator of PA / vitamin B12 deficiency . Also the usual B12 serum test can show up to 80%of INACTIVE B12 content .( you can’t make use of it ) So you see how tricky it all is !

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I didn't know that. I'm in Australia I don't feel like any doctor (even my neurologist) knows anything about b12 ☹️ It's very frustrating

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So sorry to hear you aren’t gettingthe help you need. Have a look at the Pernicious Anaemia Societywebsite. It is in the UK but you should be able to have a look at the information on there.

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I feel there is the same confusion of diagnosis with my brother. I will follow your case with interest.

Sally Patcholok - 'Could it be B12' is a great book.

Good luck.

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Hi all felt like I was reading bout myself then... I also have all syptoms u talk about for around 12 months now they are getting worse not better, had b12 deficiency detected in august level 93 with loading doses got better but now the same. Have them evety 3 months i am In pain everyday, along with concentrate issues, I have my mri in Dec which is on my nervous system-maybe this is what yours is for?

I'm waiting to see neurology 9 month wait 😣 b12 mimics ms syptoms they are so alike long road to diagnosis if u have b12 issue. I don't have pa.it' so frustrating.

Good luck x

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Don't get pushed into taking beta interferon or techfidera which they will try and get you to take. I have had to treat myself with b12 injections everyday for past 6 months. Don't wait for the NHS. My experience is that they don't understand the importance of b12. My advice is look at website b12d and read 'COULD IT BE B12' a book WHICH Goes into MS MISDIAGNOSIS is some detail. Don't let the NHS ruin your life like they have mine.

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Hi Mahliii, I have similar symptoms to you, a family history of B12 def Grandma dev Parkinsons because of PA. Checked my dad's B12 then and he had B12 def - injections for rest of his life from age 50 - 85. Because I have supplemented so raised my B12 level , GP and Haemotology not interested. When eventually GP listened re help from here, Haematology rejected referral even tho it is against their guidelines!

So it seems I fell at the first B12 hurdle and you are falling at the 2nd. I am taking B12 supplements (debatable as to whether as good as injections, but at least can choose the form of B12 you use. Hydroxy in injections has to be converted to useable B12 by the body - can be an issue. I take Jarrows methyl B12 5000mcg but now take also make seeking health from Amrita website -adenosyl B12 (particularly for mitochondria support) body needs both and will convert injections to both forms as required if there is not an issue re conversion.

Watch the B12 def video I will post

Also - this is critical. Gluten/all grains contain gluten there are a min of 60 gluten proteins and in different grains. NHS test for 2. Can you believe it? Yes you can, you are going through the NHS vit B12 debacle , so I am sure you can. (Thyroid issues - thyroid the energy engine of your body similarly crazy debacle with NHS)

So gluten = Wheat flour and all grains - cornflour - the lot. If the docs who first discovered gluten damage in the intestines could have looked into the brain as easily - Coeliac or gluten damage would have been known as a Brain damage disease. A tiny, tiny bit of Gluten in a sauce or pickle (it's everywhere) will ensure antibody attack of your brain up to 6 months following eating. First thing to do is give up Grains and remove Gluten from your diet. See Dr Tom O'Bryan's website videos. thedr.com (homepage, green tabs 'about gluten related disorders - hover over, click on videos, lots of other detailed info on his site) Gluten can cause antibody attack on any organ whatever your genetic weak link is but particularly the brain and thyroid) Any symptoms re Brain Function - give up gluten immediately and don't buy commercial gluten free products

You have to heal your leaky intestinal wall too as your body will create antibodies to anything that gets thru. Gluten makes the intestinal wall permeable in Everybody. But the cell lining regenerates quickly - some have more of a problem than others. But is often why many start noticing problems in 40s/50s they have reached oral tolerance and body can't take anymore for others its earlier when babies/children

Lots of you tube videos - Dr Tom O'Bryan, Dr David Perlmutter (neurologist) Dr Daniel Amen (psychiatist that uses spect scans on the brain - he heals with nutrition now - 1st step - eradicate gluten/grains) Dr Datis Kharrazian - bk why is my brain not working and you tube videos. Dr Peter Osborne - his site Glutenology - look at for list of foods that contain gluten eg maltodextrin, vegetable protein on labels, etc etc. It is not just about giving up bread. Also very interesting and life affirming Dr Terry Whals cured herself of mainstream labelled disease MS - was Doc in busy hospital - knew the best, could recieve the best - all failed, bed and wheelchair ridden. Cured herself rapidly with nutrition. Eradicated gluten also. Has website and email support groups/training, prob facebk - Lots of you tube videos - Whals Protocol.

My mum, dying in hospital with malnutrition, not absorbing nutrients. Eventually determined Gluten/ Coeliac altho had come up neg for all tests. Today known as Non Coeliac Gluten Sensitivity. But she obv had coeliac damage to intestines too - just couldn't find with antiquated endoscopies. She immediately got betterwith eradicating gluten. On GF diet for 24 yrs. Then in their wisdom the NHS contacted her to see how getting on and gave endoscopy - could find no intestinal damage - well of course they couldn't she had been on a gluten free diet for 24 yrs it had healed!! My mum always did what docs told her to do which was to start eating gluten again. To look out for symptoms tho - what symptoms did they tell her to look for - digestive issues. Her intestinal tract was healthy - it takesa while for any damage to create symptoms. She started having symptoms alright but not digestive so no one related to Gluten. She started with balance problems, dizziness, headaches, in bed 3 weeks at a time unable to lift head re vertigo. Then came slight dementia symptoms and when had brain scan in hosp, they took me to oneside and asked if she had ever had a stroke as found all damaged area in frontal lobe - not quite like stroke damage but it meant she had lost her sequencing skills - so that means that all autonomic function like automatically putting one foot in front of the other to walk had been impaired. Now I know this was damage to the brain caused by gluten. She died with pancreatic cancer also linked with eating gluten when have a sensitvity to.

I have shared this with you so that you realise how insidious gluten from any grain is. It can cause attack and damage of any organ. So Dr Tom O'Bryan (world renowned) advises if have any symptoms of any kind at all, first remove gluten for at least 2 months -6months to see if symptoms start to lessen. If so, remove from diet. If symptoms affect brain, heart - just remove end of.

Don't expect mainstream to know any of this altho here in Sheffield mainstream gastroenterologist Dr David Sanders has published papers and written a book last year about gluten and non coeliac gluten sensitivity. And the neurologist at the same hospital Royal Hallamshire - Dr Hadjivassalou (maybe spelt incorrectly) treats his patients for Ataxia by removing gluten. I heard him speak of on the Gluten Summit - a grain of thruth. Great title. Take Care

B12 video

b12deficiency.info/films/

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Has anyone tested you for the MTHFR gene mutation??? I bet that is the culprit! I have many of the same symptoms and have it. Basically, the mutation doesn't allow your body to process nutrients and vitamins fully. It also has issues processing out toxins, which means you store them in the body. If you do have MTHFR, you will need methyl folate or folinic acid along with your methyl B12 to absorb it properly into the body. I too have been tested for MS and Lyme Disease, and don't have either. I have had vertigo, dizziness, weird sensations all over my body, etc. My MTHFR is heterozygous A1298C. Please get tested ASAP. Dr. Ben Lynch is a great resource for this and sells good supplements. I'm still trying to find the ones I need and will be trying his soon. Also, some MTHFR people cannot tolerate methyls and will have to do folinic acid and hydroxy B12. Some people like me have a dairy sensitivity or allergy and it blocks the methyls from getting absorbed in your body, so you need to find a doctor who will test you for this.

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NO, NO, NO, NO ,NO.

Please ignore everything that med-school dropout 'Dr' Ben Lynch says. He is a FUD-master who spreads fear in order to maximise sales of his books and snake-oil and adverts on his clickbait webshites.

Over 99.5% of all people have at least one mutation in the MTHFR gene.

There is but one MTHFR mutation shown, by reproducible scientific studies, to have any effects of folate metabolism. That is a homozygous mutation for the C677>T mutation that is carried by 8.8% of the population (including me).

Even if you have that particular mutation you can still produce methylfolate, just at a reduced efficiency (about 30% of normal) and the body easily compensates for that by making more of the enzyme.

Even if that mutation were to totally block methylfolate production (which would be fatal in infancy) you could fix it by taking methylfolate. There is absolutely no need at all to take methylcobalamin instead of cyanocobalamin or hydroxocobalamin.

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Hi falkorsmum, can you get tested for MTHFR by the NHS?

Dr Ben Lynch's supplement brand is Seeking Health, I order from Amrita website :)

I take methyl and adenosyl as told adenosyl is reqd also for mitochondria support

Am about to re order and going to order the other B vits too. Was unsure whether to add folate as I thought this I could get from my diet and nutribullet veg and fruit smoothies.

Thanks for video :)

I had a private active (Holo) B12 test and my active surprisingly to me was approx 50/60%. of total serum B12. Normal would be 20/30%

Which tended to make me think the active was backing up and not getting into cells hence my symptoms.

Any info / insight you could pass on, I would really appreciate. Thanks

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Hi,

B12 books I found useful.

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies. There is a chapter in this that mentions MS type symptoms.

I have read that PA (Pernicious Anaemia ) and other causes of b12 deficiency can sometimes be misdiagnosed as MS.

PAS article on neurological consequences of PA which mentions MS.

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

PAS is based in Wales, UK but has members from around the world.

If you put up another post with Australia in the title you might get contact from forum members in Australia.

Link to Haematology Society of Australia and New Zealand

hsanz.org.au/

"I tested negative for the Intrinstic Factor antibodies. Hence why they don't think it's PA"

Next link to a UK B12 document mentions Antibody Negative PA (PA where IFA, Intrinsic Factor Antibody, test result is negative or normal range). I'm sure BCSH guidelines would be of interest to australian doctors.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Another UK article

I'm sure your doctor would know about BMJ (British Medical Journal).

BMJ B12 article

bmj.com/content/349/bmj.g5226

I am not medically trained.

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Thank you. I will look through these ;)

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