So after a repeat MRI, I’ve just had a follow up with the neuro who specialises in MS (Brain and Mind Centre, Sydney).
Follow up again in 12 months with another MRI to check on brain lesions (my spinal one disappeared) and if there are more, he might consider MS as a diagnosis.
He wants me to decrease my B12 injections and says that if I have any symptoms while still injecting so frequently, then it is more likely to be MS as I “have so much B12, it’s flooding your system”.
Never mind that I’ve had a complete cessation in most of my symptoms on the injections, and then any crashes/relapses are resolved with….gasp….injections.
🙄
Why is it so hard to get this deficiency sorted?? Why does no one know about testing levels and going by symptoms etc???
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Do you have a diagnosis of PA ? If that be the case and your on therapy it is common sense your system is flooded with B12 ! Hence why they state 'do not retest' once on treatment.
Unfortunately MS is often mistaken for a B12 deficiency and misdiagnosed. I too have the brain lesions and had to have MS ruled out.
If your symptoms have ceased with injections I would have thought that is proof enough your dealing with a B12 deficiency and not MS. ( I am not medically trained ) but seen enough ignorant consultants over the years that have diagnosed incorrectly. My neuro dismissed all my symptoms even though I presented with proof they were B12 related. He even admitted he new little about PA but still bloody mindedly went on to try and label me with a functional neurological disorder.
Yeah I don’t have a PA diagnosis yet - I’m waiting on gastroenterologist follow up. And my GP has been quite good.
My symptoms have really eased up on EOD. I had a brief flare up after the colonoscopy anaesthetic (a week of twice daily and then a week of daily before going back to EOD).
I also had the colonoscopy and it sounds as if your going down the correct rout. At present I am waiting for gastrology to confirm a diagnosis of crohns. At least you have an understanding Gp, which is a bonus.
I was the same and had the flare up after the colonoscopy. Like you I had to increase my injections for a while. It seem's your on the ball and know your own body. Keep doing what your doing .
Thanks Jillymo, it’s so frustrating especially when it has been working so well.
I didn’t realise you flared up after the colonoscopy too (apologies if you have told me before!). It surprised me and I asked the neuro today if it was maybe my liver dumping my “natural” B12, as I feel the same after even one drink of alcohol.
When you consider the pre-med that totally clears you out I cant say I were surprised at needing more B12 after the proceedure, also the amaesthetic lower's our B12. I am not able to tolerate alcohol either!
If I ever get to have the pending capsule swallow ( I have been waiting months ) I will have a conclusion of a diagnosis. My colonoscopy showed inflammation of a large part of my colon near the illium. The consultant told me I will need B12 for life.
I'm not medically trained but as both MS and B12 deficiency can cause damage to myelin layer around nerves and both conditions can cause brain lesions, I think it's possible that B12 deficiency could be misdiagnosed as MS.
It's possible for people to have both MS and B12 deficiency at the same time and I've read that some people with MS benefit from having B12 injections.
Search online for "MS B12 treatment"...should show some interesting articles.
Have you been assessed for the possibility of SACD, sub acute combined degeneration of the spinal cord? Might be worth asking your neurologist.
This is a potential consequence of severe B12 deficiency. I've read that SACD can be mistaken for MS.
SACD can sometimes happen in people whose serum B12 is within normal range.
Search for "Turner SACD functional B12 deficiency" to find a case study where someone with normal range serum B12 developed SACD.
PAS (Pernicious Anaemia Society) have an article on SACD.
Thanks Sleepybunny. I’ve had two brain/cord MRI’s now. The initial one showed a small lesion on my spine but this had disappeared by the time of the second scan.
I know they were looking for SACD but the report was quite definite that it wasn’t evident, which is good.
I’m hoping that, if I continue on my B12 schedule, the other lesions might decrease or disappear before the yearly follow up next august. Wouldn’t that shock them??
Technically, he's not wrong. If you inject EOD then your transport mechanisms for B12 (holotranscobalamin) are completely saturated. In clinical tests of injected B12, these receptors Transcobalamin II) remain fully saturated for almost 48 hours after an injection.
However, with regards to recovery from B12 deficiency, unless you had a very mild deficiency, recovery does not happen directly after the first injection. A serious B12 deficiency creates extensive neurological damage which can takes from weeks to years to heal. If symptoms have been untreated for many years, they may not disappear entirely, no matter the treatment frequency or duration.
My levels were classed as “mildly low” at 172pmol/l and Active was 56pmol/l. Both in the indeterminate areas. But I had symptoms and they have gone with the injections so 🤷🏻♀️
I guess I hoped that this neuro who replied to an email about B12 causing lesions, would be more overly knowledgeable about this stuff. He’s still better than my original neuro so I guess I’ll stick with him.
Most of my serum (total) B12 results were well within normal range which made it virtually impossible to get the doctors to consider B12 deficiency despite me having over 50 typical symptoms. I did have one result that was well below range.
Club B12 website mentioned a conference in 2025 which I think is about homocysteine.
176 is NOT mildly low. I was bed ridden with fatigue, had sever brain fog, low appetite, back pain and felt like I was dying.
176 is very low. Yet another misconception of the docs. The range for normal b12 is so invalid in my book. Although there are people who are much lower that won't have symptoms, I most certainly did and have permanent damage.
That being said there is hope if you stay with the injections. Don't space them out until thee symptoms resolve. Never let anyone convince you to space them out.
56 pmol/L active (37-150pmol/L active reference range)
It went down quite a bit in those six months but as you can see, it hasn’t gone past the lowest reference ranges for either serum or active.
I don’t know how anyone survives on 135 because I felt awful as well.
I have been self injecting since July 2024 and it’s been the best thing, taking charge of my health. My doctor was very keen for me to manage my injections until she found out I’d moved myself from weekly to EOD. 🤷🏻♀️🙄 but it’s helped so much! I’ll eventually trial spacing them out a bit, but at my own pace and slowly. I don’t want to ruin what I have regained.
Shaking my head! How do you even trust them at this point? I was getting some tests done yesterday and the CT scan lady told me she has PA and injects once a month. When I told her I inject everyday, she tried to tell me I shouldn't do that because I will overload my system with b12. She has PA and is in the medical field and doesn’t even know the truth about her own condition. I told her about PAS. That's all I could do. I didn't have much time to talk to her. It is mind blowing to me how little she knows and how much she believes the Gaslighting. Sad. I sure hope you're tests give you some answers. It's hard to trust a doctor that thinks you are flooding your system with too much b12. But what wise can we do? Good luck to you.
Wild. Where do they get this from because there there is no standard medical text or nutrition/dietetic text that claims B12 is unsafe at some dosage. I've heard similar things from a registered dietitian which was very disappointing.
I just don't know technoid it is crazy. Imagine what other people go through with other conditions that are even more unknown than ours. I always wonder when I hear "they died from a long illness" And after that long illness you still don't know the name of it? I always wonder if it was undiagnosed, undertreated PA.
It’s crazy how many people I know who have now gone “oh yeah, I got a low B12 result and I had a few injections and now I’m fine again!” Maybe that’s more the norm than what I’ve experienced?
My SIL even said “oh my dr wanted me to get injections but I couldn’t be bothered so I just haven’t done anything about it. Do you think I should?” This was the point where I could barely walk and actually felt like the Walking Dead. I just stared at her aghast. lol.
I mentioned PA on one of my emergency visits and the registrar (I don’t have much luck with them) laughed at me and said “but you’re not anaemic!” I quickly replied “actually 60% of PA patients nowadays rarely present with anaemia and that is well documented in literature.” She was a bit stunned. It felt good.
I will keep seeing the neuro, if only to definitively rule out MS and other things. And I will keep going with the B12 that helps so much.
Yes that has been my experience too. It just amazes me. I have two friends that have PA right now. I told them that I thought they had B12 deficiencies over a year ago. They finally got tested and they do have PA. And they are both on the minimum treatment. I guess they're too scared to listen to me. I don't know. But if it wasn't for me they wouldn't even know they had PA. It's pretty crazy. You can't help those who don't want to help themselves. All we can do is spread the word and one day when they realize that everything the doctors have been telling them to do isn't helping, they'll remember what we told them. I guess people need to learn things the hard way. I know I did. Lolol I hope you get your body under control and feel better real soon. I do let doctors run the silly tests because you never know when they might accidentally help you. 🤞
Yes I love his work! Interestingly my GP saw the registrars name on my paperwork and said that she knew her. I’ve since given the Gp those articles and others, so maybe she’ll continue the education?
I'm sorry to hear that your neuro is so unwilling to examine the evidence. A dear friend of mine who has since passed on, ( an experienced medical specialist in a different field ) often said when puzzling over a diagnosis...."If it looks like a duck, swims like a duck and quacks like a duck, then it most likely is a duck!" If the symptoms match those of B12 deficiency and respond so well to B12 injections then it will most likely be a B12 deficiency, regardless of the cause!
I do agree with Nackapan that it is worth having any tests on offer to rule out other disorders that may be running parallel, but keep doing what you are doing to alleviate your symptoms, because you know by now what works, much better than any disinterested specialist!
( Please don't be too disappointed if your gastoenterologist sidelines you as well.... mine has told me she doesn't believe I have PA as my biopsies came back normal, my antibodies weren't high enough and serum B12 wasn't low enough , and has sent a referral through for me to see a neurologist that makes me sound like a total crackpot!)
It is interesting to note that neither your neurologist nor my gastroenterologist have offered us an alternative treatment for our symptoms, which tells me that they really aren't so sure that we are on the wrong path!!!
Stay well! Keep fighting the good fight - one day we will all be able to say " See! I told you so!"
How frustrating about your gastro doc. It's insulting isn't it? You have ask the tests they come back pos for PA and they deny it. Ugggg! Glad you're treating yourself.
Thankyou, Sleepybunny. Theses are great resources.
I will print some of this off to take with me if I get to see the Gastro face-to-face, and supply it to my GP as well. Maybe even a copy for the neurologist if I ever get an appointment!
I consider myself diagnosed, but they don't concur. It would be nice to have a definite diagnosis on record.
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