I read that there are many symptoms if b12 deficiency that are almost the same as Multiple Sclerosis. Does anyone have any information on this topic? I was looking into an article written by PhD students at a University in Australia. And they had compared such similarities between MS and a b12 and general B Vitmains deficiency. It was startling
B vitamins, B12 and multiple sclerosi... - Pernicious Anaemi...
B vitamins, B12 and multiple sclerosis symptoms
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Goddess110
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All I know if us often misdiagnosed.A brain MRI shoujd rule in or out MS
Gambit62Administrator
This is link to a search for multiple sclerosis + B12 in pubmeds.ncbi.nlm.nih.gov/pmc/?term=...
lot of articles come up
A family friend has MS and was involved in a study a few years ago on the effects of B12 on MS - some patients with MS do respond but unfortunately it didn't help her. The theory would be that B12 is involved in the process that maintains the protective sheath around nerve cells which is degraded in MS so more B12 may help with repairing this.
Hi
A link that might be useful
Misdiagnsosis of B12 deficiency
Thanks everyone this is so helpful. I know that b12 and vitamin b in general is very much talked about as having a correlation. And I was vegetarian for a long time alongside a vitamin D deficiency
Dr Chandy covers it in his book.
As already mentioned and as I had, an MRI scan of the brain and spinal cord would tell you whether you have MS or not, in my case I was diagnosed with a cervical spinal stenosis, that with depleted B12 was giving me the symptoms of MS.
Yes I have multiple sclerosis. I was only diagnosed recently and started the meds. They have their own side effects. But i went onto an elimination diet and started to take supplements like vitamin b complex, vitamin D and fish oil. I stopped all carbohydrates and saturated fat. Its been around 6 months and although i still have pain and fatigue . I can move my ankle which was weak and stiff due to the MS for at least 5 years before my diagnosis.
Hi again,
I believe that all these books mention MS and B12 deficiency
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"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 (US authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Just wondered if you were ever assessed for SACD, sub acute combined degeneration of the spinal cord which can be associated with both B12 deficiency and folate deficiency.
I have read of cases of people with SACD due to B12 deficiency being misdiagnosed with MS.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
This is very interesting. Thank you for these articles. Actually I had never known that a b12 deficiency over a period of time, could lead to MS type symptoms. Until I started reading and doing research myself. The doctors don't want to hear about it and they saw 2 active lesions and put me on DMT drugs. I know I could well have been b12 deficient because I was vegetarian bordering on vegan for many years. But even today, no doctor wants to hear about nutrients overall. I had a blood test which included b12 and it came back normal. But a nutritionist said those tests do not factor in absorption in the digestive tract, and intrinsic factor. So you could show up as normal in the test, but your cells are not absorbing the nutrients at all.
Hi,
Do you mind me asking which country you are in.
I'm in UK and have lots of UK info I could post that might be of interest.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some members in other countries.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
I'm in the UK as well.
Sorry for so many replies, struggling to put more than one working link in each reply.
B12 Awareness (US website)
Hi again,
A few more links for you...not sure if links will work though.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
From Dutch B12 website, units, ref ranges and treatment patterns may vary from UK.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive IFAb test result/letter from specialist confirming diagnosis/copy of test showing low B12 etc keep a copy in a safe place.
Accessing Health Records (England
patients-association.org.uk...
Some people use NHS app to access medical records/test results etc.
CAB can help with NHS complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Not currently taking on new cases but this may change.
Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
Have you ever been tested for PA (Pernicious Anaemia)?
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test but some UK GPs and specialists may not be aware that Antibody Negative PA is a possibility.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
More info on PA tests/diagnosis on PAS website.
pernicious-anaemia-society....
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
Hi,
"The doctors don't want to hear about it and they saw 2 active lesions "
I am not medically trained and don't know how doctors tell the difference between brain/ spinal cord lesions caused by MS and those caused by other factors.
I do know that B12 deficiency can lead to lesions in the brain and spinal cord.
I assumed you had a MRI, might be worth getting hold of any report/letter sent by specialist to GP after MRI.
Articles about lesions in brain/spinal cord from B12 deficiency
Aimed at researchers/health professionals.
ncbi.nlm.nih.gov/pmc/articl...
hindawi.com/journals/crinm/...
ncbi.nlm.nih.gov/pmc/articl...
If GPs/specialists don't want to listen to you, might be worth putting queries into a brief, polite letter as harder for them to ignore.
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