Hello, I hope someone can point me in the right directly. I am desperately seeking a neurologist in the UK who is able to tell the difference between Pernicious Anaemia and MS
(especially how both show up on MRI scans) as I currently have two different doctors telling me two different things and I am unsure where to turn for clarity at this point.
I don't think you can tell the difference.
I looked a site describing brain lesions and their symptoms.
my.clevelandclinic.org/heal...
All the symptoms listed are ones we suffer from with B12D.
The article mentions that brains lesions have the ability to heal. They don't know how or why.
I wonder if the B12 supplements we take are healing brain lesions as well as repairing nerve functions?
Hi,
I hope there is something useful in these links.
Link to a Venn diagram showing some differences between MS and B12 deficiency
verywellhealth.com/vitamin-...
Misdiagnosis of B12 deficiency as other health conditions (mentions MS)
b12deficiency.info/misdiagn...
PAS article "Neurological Consequences of Pernicious Anaemia"
pernicious-anaemia-society....
PAS article SACD, sub acute combined degeneration of the spinal cord.
pernicious-anaemia-society....
NICE guidance MS
NICE CKS guidance B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
I found some interesting research articles when I searched online for "white matter lesions B12 deficiency.
Are you a PAS (Pernicious Anaemia Society) member?
PAS membership is separate to membership of this forum.
There is a PAS helpline for PAS members and useful articles on their website.
pernicious-anaemia-society....
I wondered if any of the UK MS charities could help you.
I'm not medically trained.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles etc
Some links may have details that could be upsetting.
healthunlocked.com/pasoc/po...
I've spoken to the MS charities who have all been lovely but ultimately not that helpful, I spoke to the PASoc helpline, again lovely but not that helpful.
It seems fairly commonly accepted that misdiagnosis is a huge issue, but there is little guidance on what to do if you think you've been affected by this and how to get the clarity you need in order to make the right decisions for your health, I'm genuinely at a loss for how to move forward.
Thank you for sharing all the links and papers, I think I have read and saved most of them already but will read through and check.
Surely it makes sense to try B12 supplements. It won't cause any damage as B12 isn't toxic. See if it helps with your symptoms. If it does have another MRI and see if your lesions are getting better.
I'm on EOD b-12 Injections since my PA Diagnosis in October and would like to continue these but I am being pushed towards DMT instead.
What is DMT?
Disease Modifying Therapies.
I only heard of DMT as Dimethyltryptamine and I wondered why your physician was pushing you onto psychedelics! 😅
If you have PA you need B12 injections for life. You can't stop having them. Yet another example of how ignorant some doctors are. Don't be bullied into stopping your injections. .
Hi,
Have you thought about keeping a daily or weekly symptoms diary. If your symptoms are showing improvement while on EOD B12 injections, that seems to me proof that you need them.
This link below explains recommended treatment patterns for B12 deficiency in UK
cks.nice.org.uk/topics/anae...
PAS have a leaflet "Treatment is for Life" which you might find helpful.
pernicious-anaemia-society....
Link to thread about Patient Safety, has useful links for those having difficult health experiences.
healthunlocked.com/pasoc/po...
I have read that some patients with confirmed MS benefit from B12 injections so to my mind it makes sense to continue injections.
Both PA (also B12 deficiency from other causes) and MS can cause damage to the myelin layer around nerves.
SACD, sub acute combined degeneration of the spinal cord due to PA/B12 deficiency can be misdiagnosed as MS.
Blog post from Martyn Hooper's blog about PA, mentions SACD
martynhooper.com/2010/09/21...
Maybe you could ask the doctor who thinks it's MS whether it's possible it could be SACD and show them the PAS article on SACD.
I searched online for "misdiagnosis SACD B12 deficiency MS" and found some interesting articles.
Some UK forum members turn to treating themselves as a last resort if NHS treatment is not emough. I was forced to treat myself when NHS refused to treat me.
Some get extra B12 injections from private Gps or beauty salons. Some try high dose oral B12 but this doesn't work for some people and some turn to self injection.
I'm getting every other day injections, my issue is not my current treatment, which is fine, it's that they want my to stop my PA treatment and start DMT treatment for MS instead.
I keep a symptoms diary already but I've been a bit lapse with it recently due to all the stress.
If they stop your injections then you can fight this due to PA diagnosis or if you don't want the stress buy your own B12 and self inject.
As for the DMT therapy it's a difficult one. I was showing lots of signs for MS but when I had my MRI after taking b12 injections for 4 years I didn't have any lessons. Infact I was told my brain was very healthy looking for someone my age. I am inclined to think B12 has helped me massively and I will never stop taking them even if I was to get an MS diagnosis.
Dr's are very good at treating the sysmtom but tend to lack experience when it comes to health and root cause. They love to throw pills at us.
Read Dr Wahls. She is a scientist who has MS. She had every medication known to man and was on deaths door. Fed up with pharma medicine she changed her diet and increased supplements and today she is medication free and her MS is in remission
Good luck.
Uncoincidentally daily methyl b12 /b complex is a part of Wahl's "miracle."
IMO, our healthcare system doesn’t have clear understanding of wide range of so called “autoimmune” conditions.
Any autoimmune means that your immune system is in overdrive. The key question is what is the cause. However, very rarely doctors bother to establish the cause of it. The problem with such approach is that people take medicine but the cause and trigger that led to such condition at the first place can still be there.
You can try large doses of B12 for couple of weeks and see if there is any difference… If it’s deficiency, you will feel the difference quickly.
You can have a look at other key triggers (food, toxins etc) of autoimmune and eliminate them for 2-3 weeks and check if that makes any difference.
my sister has MS I have PA. I also have severe spinal degeneration and when I describe my symptoms she says they are very similar to what she has. My PA is fully treated EOD , my symptoms are now basically due to cord and nerve compression in my cervical and lumber spine.
I can fully understand your concerns. I had very low B12 serum, but I suspected this and began heavy sublingual treatment before the GP tested. The tests said my B12 was 176. Because of the symptoms I had a MRI scan showing cervical spinal stenosis. The lower range for B12 deficiency was 174 so GP not interested in B12 treatment, but referred me to professor May at Walton. By which time I was injecting B12 EOD and getting my body to do what I wanted, Professor May was very happy with my B12 injections and eventually wrote saying so, a copy went to the GP but they ignored it completely, after a couple of visits to Walton I was discharged as I had become so much better and professor May retired. I remember he phoned me up to say he was retiring and if I had any more symptoms to get referred back to Walton. It makes me think how close MS and B12 deficiency are related.
Hi Seaglass, you are right from what info I’ve seen , a good neurologist should be able to tell the difference between MS lesions and B12 lesions. I had a full brain and spine MRI at Bristol Southmead neurology dept and a Dr Luke Canham said the MRI radiologist who looked at mine was extremely good as was he. I fortunately had no lesions but you should be able to have copies of your results sent to you . They are your MRI scans after all. Are you in the UK? I also mentioned before my MRI about would they be able to tell if I had lesions that were MS related or B12 related. They may not have liked the fact I brought it up but tough it was my health . I’m used to advocating for myself as two years ago I had complex cardiac surgery and if I hadn’t insisted on a heart CT scan before surgery I would have been in big trouble during the surgery itself as I actually needed an aortic root enlargement to fit a new aortic valve in and a new pulmonary valve plus other stuff done. So push for what you need. It’s your body. I am never rude to medical peeps as they’ve saved my life 3 times now and I love our ailing NHS but I’m politely assertive. Good luck
Thank you for sharing your story, I think sometime I have struggled to be assertive in the past which is how I've ended up in this situation because I could never get them to treat the low b-12 so had to go private when I was finally earning enough to pay for it and they don't recognise the private diagnosis.
I really feel for you. It’s horrible. I’m too old to take gaslighting anymore . I wish you luck anyhow
I was diagnosed with MS when I was a teenager - I've never had any follow up on that diagnosis, no idea what my B12 was like at the time.
In the past 10~15 years I've had low B12 levels, and the injections have helped...
I had an MRI done just over a year ago, GP won't tell me what showed up on it.
I'm wondering if it's a comorbidity of MS and PA...?
My understanding is that they both mimic each other, and seem to be hard to tell apart, if you've not read it it's worth reading the book 'could it be b-12' as it goes into this in quite a lot of detail, have you had any treatment for the MS or just for the b-12?
I've not been allowed to tell anyone about the MS diagnosis, I was living in Britain at the time, and my medical notes weren't sent over here (Ireland) despite my asking for them...
I've only had B12 injections, and am self injecting now
Why have you not been allowed to tell anyone about the diagnosis? I’ve got family in Ireland and am entitled to citizenship maybe I need to seek medical help over there. I take it you’ve not taken any of the MS treatment in that case and that the b-12 is keeping you well?
Because my mother would never let me tell anyone. She doesn't even know what I was diagnosed with, she just knows she didn't get put in jail for poisoning me, so she made a career out of telling people "oh my daughter isn't sick, she's lazy. She was in hospital and they proved there was nothing wrong with her" And not once did anyone question what she was saying, or speak to me.
If I try telling people "I'm not well" they just laugh at me...no GP will listen to me, having bought into her lies. I've managed to say to one GP that I have MS and she totally ignored me
The B12 does seem to be helping
Please don't come to Ireland looking for medial care, you won't get any, unless you're rich.
Lots of people in Ireland have to go to England to look for medical help cos the doctors here don't know what you're talking about. A woman who lives near me spent a fortune over a decade going back and forth to England to get a diagnosis of what was wrong with her, because no doctor here had a clue what was wrong with her. Turned out she has EDS, and there are no doctors in Ireland who specialise in it.
I found a paper which seems to have a useful segment:
"positive findings of oligoclonal bands in CSF (Cerebrospinal Fluid) of patients with clinical phenotype of CNS (Central Nervous Systen) demyelination are supportive of MS vs. vitamin B12 deficiency."
from
Vitamin B12, demyelination, remyelination and repair in multiple sclerosis. Journal of the Neurological Sciences (Miller, A., Korem, M., Almog, R., & Galboiz, Y. (2005).
The full paper is behind paywall.
Thank you. So I guess I need to push for a lumbar puncture then?
If you have reason to suspect MS. Many B12 deficient patients suspect they might have MS. I did. I think its the paranoia that comes with severe B12 deficiency. and disruption to neurotransmitters. They sometimes even get an MS diagnosis before the B12 deficiency is discovered. If all signs point to a B12 deficiency, I think its much more likely you "just" have a B12 deficiency, than MS. Its true they are difficult to tell apart but sometimes the simple answer is the correct one, if it fits all the available symptoms.
My MRI didn't show any lesion except some abnormalities which my neurologist told me it's just showing some kind of pressure on your body but I'm still doubtful with the results. I inject every other days and I feel improvement but so slow. In the meantime soon after starting injection my symptoms developed so rapidly and then stopped and started remission but very slowly. My trapezoid muscles before injection didn't have any symptoms but soon after starting injection my trapezoid and deltoid and whole of my arms also started showing sever bad symptoms. I couldn't even sleep because of sever weakness in my arms and back and it caused my spine in neck get degenerated. But these symptoms bare getting improved after almost two years injection. Still my eyesight is terrible but improved alot. After waking up in the morning I feel my torso is saggy wet because of excessive sweat but it's improving. I think nobody exactly knows how we can get rid of this nasty disease but one thing is clear never lose your hope
How to differentiate between PA and absorption issue
How to make the most of an upcoming neurology appointment
PA and the Anaemia bit...
An interesting read on PA
