Hello everyone, I wondered if anyone has a similar experience to my sensory loss & if the cause of my symptoms might be functional B12 deficiency?
I had an MRI scan 2 years ago which showed some demyelination in the C5-C7 region of my posterior spinal cord.
The neurologist had me tested for all kinds of things including functional B12 blood test & Lyme's disease, but results were in normal ranges apparently, so no follow up as yet, & I am worried about subacute combined degeneration of the spinal cord.
Nerve conduction tests for peripheral neuropathy were normal.
For 13 years I had had slowly increasing sensory loss starting in my in my feet & gradually ascending up my legs. My GP & neurologist couldn't find a reason for it, so have had no treatment other than vitamin D supplements.
(I started self medication with sublingual B12 , iron and vitamin & mineral supplements in case they might help. I do exercises to try and strengthen my legs and proprioception.)
Blood tests were always in normal ranges for everything except for very low vitamin D . (I don't have thyroid problems, type 2 diabetes or MS. I do get a lot of ectopics.).
I would be so grateful for any information or anything.
Thank you.
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I left detailed replies on these threads below with links to help those in UK struggling to get adequate treatment eg suggestions of UK B12 documents to read, people to contact if unhappy with treatment, sources of help for GPs.
Thank you so much for all the information it's really interesting and very helpful for when I see my GP in a few days time.Best wishes and happy new year.
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal). His most recent article was published July 2024.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) GP may be interested in online talks organised by B12d.org
5) Some of the UK B12 charities/organisations may have training courses for health professionals.
Some GPs can find it difficult to cope with an assertive patient who asks questions so be prepared for GP/patient relationship to come under strain.
"I am worried about subacute combined degeneration of the spinal cord."
I wondered if you'd asked your GP directly if you were at risk of SACD?
If GP says there is no risk of SACD as serum (total) B12 levels are normal range then might be worth passing on this article below.
Search online for "Turner SACD functional B12 deficiency".
This will show an article where a patient developed SACD from B12 deficiency despite serum (total) B12 levels being normal.
I've read articles that suggest some cases of SACD can be treated effectively if it's found early enough and if patient is given enough B12.
I think it's rarer but I've read articles suggesting folate deficiency can also lead to SACD.
If someone has B12 deficiency and folate deficiency then both deficiencies should be treated. My understanding is that B12 treatment should be started first.
"but results were in normal ranges apparently"
Have you seen the actual results for all your blood tests?
I often say to people to check results themselves even if told everything is normal.
In past , I was told everything was normal and when I checked for myself, I found abnormal and borderline results.
Look for trends. Results that are increasing or decreasing over time could be significant even if within normal range.
Have you got recent results for folate and iron?
Forum members here often report folate, iron and Vit D deficiencies as well as B12.
UK GPs often only test ferritin but there are other iron tests that they or a specialist can order.
B12 deficiency can lead to red blood cells that are larger than normal (macrocytosis).
Folate deficiency can lead to red blood cells that are larger than normal (macrocytosis).
Iron deficiency can lead to red blood cells that are smaller than normal (microcytosis).
A person with B12 (or folate) deficiency with iron deficiency may appear to have normal sized red blood cells on full blood count as effects of iron deficiency can mask effects of B12/folate deficiency.
I have some concerns about this document. I think there's too much emphasis on treating with oral B12 as an alternative to B12 injections. For me, only B12 injections keep symptoms under control.
2) "NICE CKS Anaemia - B12 and Folate deficiency" - published some years ago but updated in 2024.
CKS stands for Clinical Knowledge Summary.
3) Try to track down local B12 deficiency guideline used by your ICB (Integrated Care Board) in England. Health Boards in Wales/Scotland as your GP will probably look at these.
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they use and for a link to or copy of them.
FOIs can also be submitted to GP surgery but this might irritate them.....
4) Other documents
You might be interested in reading these
"NICE CKS Anaemia - Iron Deficiency"
It's possible to have iron deficiency without anaemia.
Patient Info website has a good article on non-anaemic iron deficiency.
I would ask for a copy of your blood test results. You are entitled to them. I would mot rely on a doctor telling you they are fine. Being in range does not mean they are fine. Its good the neurologist has been checking out neurological causes but can't find anything. Therefore in your shoes I'd be trialling every other day b12 jabs as you have neurological symptoms to see if that helps. Your b12 being in range does not necessarily mean your b12 is fine.
Demylation of the spine is often associated with b12 deficiency. It's worth a try and cannot harm you.
Do have a look at b12d.org symptom checker as well.
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