Last reply 2 weeks ago
Possible misdiagnosis

Hi folks 👋🏻 anyone had experience with tests for neurotoxicity or ADEM? I think I might have been misdiagnosed with MS and actually have ADEM or been exposed to neurotoxins.

I’m building a folio of research to take to my neurologist and see what he says. Ballsy, I know 😂 but it just isn’t sitting right with me…

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itsmewithms
2 weeks ago

Interesting. I haven’t heard of this one. When, after several years of being treated for MS, I had lesions on my spine they were concerned that I actually had Devics syndrome so sent me in for blood tests that confirmed that I do have MS vs that. I didn’t think things could be worse but apparently they could be if I had that ;-o so good thing.

I assume you have had MRIs of brain and spine and they see lesions although apparently for ADEM they will see them as well but over time they change? This article discussed using MRIs to distinguish the two…or maybe time is need as well? It is always a good idea to understand and push back (in a totally respectful way ;-0 ) our diagnosis and treatment.

https://my.clevelandclinic.org/health/diseases/14266-acute-disseminated-encephalomyelitis-adem/diagnosis-and-tests

Good luck!
Laura


emma_t
2 weeks ago

@keepsmyelin99 Hello again, okay so you are from scotland and I would assume you have had the similar tests as me. I got a letter through the other week saying my test for NMO was neg and the blood tests for MOG antibodies, so of I course I was like what’s that, went on to google and found an article that included ADEM in this MOG testing. This was also all negative for me but I would assume they have tested you for that. No harm in asking I am like you I want a complete breakdown of what’s been done and what else it could be. Neurotoxins though.. how do you get exposed to them? I’ll probably google this as soon as I’ve finished this message 😄


keepsmyelin99
2 weeks ago

Hi @itsmewithms – thanks! I’ll check that link out. My diagnosis was fairly quick which was good because it meant that I didn’t have the years of waiting that many people sadly have to face. But I think because it’s been so quick I’m starting to question it. I’ve had two MRIs and they were 4 weeks apart. There were no new lesions between the MRIs, the second one focused more on my neck because they could see a possible lesion around my neck from my head MRI results but weren’t sure it was an actual lesion or not. I was diagnosed and then passed on to the MS team.

Then, the first time I met with my neurologist, he said I didn’t have a diagnosis yet and mentioned Devic’s/NMO. I was a bit shocked but he sent away for AQP-4 blood tests and my results came back negative – just like yoursef and @emma_t ! I’ve not had the MOG test though. I’ve also not had a lumbar puncture….

Neurotoxins can come from antibiotics (amongst other things like heavy metals, solvents, alcohols etc.). What’s striking to me is that a few weeks before I first presented with symptoms of MS, I was on antibiotics for a small infection of my finger. The symptoms of neurotoxicity are almost exactly what I experienced as my first symptoms.
Also, ADEM can stem from infection – which I had in my finger. I was in perfect health before the symptoms started presenting and I’ve recovered really well after steroids. I’m beginning to think that the doctors – although they have been brilliant and listened to my every concern which led to me getting tested for MS – might have overlooked these two possibilities.

I don’t know. It just doesn’t sit right with me that the instances of infection, antibiotics and symptoms fell so closely to one another…


itsmewithms
2 weeks ago

How crazy. My husband has (ulcerative colitis) and swears it kicked in for him after he had antibiotics due to severing a tendon. He, of course, had antibiotics in the course of treating that cut and surgery to repair it.

So many people on the forum have cited high fevers and EBV as an onset factor, perhaps, of their MS. I really can’t think of either of those. BUT most often they are treated by antibiotics and I know that I was treated in middle school for ear infections and received antibiotics for them…I actually passed out from one and got rashes from them, etc. until they decided not to give me ones in the penicillin family. They just said I must be allergic so I don’t get that.

But- if we step back and say it can be caused by antibiotics instead of the issue it is remedying that may be a better lead…good thinking! but who hasn’t had antibiotics?! and how many years after which course of them did your first MS symptom show up…and was that the one that ended up in final diagnosis or not! ughhh!


keepsmyelin99
2 weeks ago

I know – it’s a possible lead with so many “what if?”s attached to it 😂

But yeah, for me, I think that’s the only time I have ever had antibiotics. My mother claims otherwise but I can’t ever recall taking them for anything else… it’s so weird!


nutshell88
2 weeks ago

i was an arab saudi diagnosed when i was 17 it was the first time we hear about ms
i remember at school i had two vaccination when i was 16 or 17 cant recall non of my classmates did they even blamed me
ive never heard of adem either
16 yrs has gone with me wondering was it my fault or theirs, feel like crying but such ad life whats written in our destiny the eye must see


keepsmyelin99
2 weeks ago

It’s such a shame @nutshell88 – I’m just eager to raise the possibilities and get it investigated as close to my original diagnosis as possible. Hopefully my neurologist will hear me out and help me find the answers I’m looking for.


emma_t
2 weeks ago

Hmmm interesting… MS is such a hard condition to diagnose I didn’t realise there was so many similar things that it can be mistaken form. They just told me on my letter they tested for MOG-iG antibodies or something and she told me it was for MS ‘mimics’ along with the NMO. My story sounds very similar to yours had two MRIs 4 weeks apart and no changes but found a questionable long lesion on my neck.. it’s also interesting to look up neurotoxins and it can be from solvents, which I use everyday in my work 🤔.. I hope you get some answers though and tell us about it when you do!


emma_t
2 weeks ago

Also why haven’t they done a lumbar puncture?? That’s pretty much a definite diagnosis if you’re OC bands are positive. Mines however, was negative! But still doesn’t mean I don’t have MS so it’s a tick in the box to say they have done X Y and Z. I mean if they can diagnosis without it great because it’s not the most pleasant.


keepsmyelin99
2 weeks ago

I know @emma_t it’s so strange. I keep finding things and I’m like “surely that can’t be a coincidence?!”. It’s interesting you say you work with solvents daily – but I think your tests have been quite rigorous as you say. I don’t know why I’ve not had a lumbar puncture, but I kind of thought it’d be essential for diagnosis so it’s making me question everything… strange! I don’t exactly want a lumbar puncture but if it means possibly missing a mimic, then I’d rather have it done just to be sure. If I were to start a treatment for MS when I actually had a mimic, it could actually do me harm! I’m keen to avoid that 😂


laura-forde
2 weeks ago

Hi, I think I’m a patient at the same clinic as you the Anne Rowling Center. I too am on Tecfidera, my first” episode” was brought on by two bouts of flu within two months with three MRI scans taken over a 18 month period with activity/ inactivity registered during that time. My neurologist considered a lumber puncture but talked himself out as Scot NHS doesn’t need that for diagnosis. MRI scans are v good these days. Can’t comment on your investigations but by all means get the best out of your appointments by discussing your research.


keepsmyelin99
2 weeks ago

Thanks @laura-forde 😊
I don’t think anyone has considered an LP for me, but I may be wrong. I’m definitely going to mention to my neurologist – I’m actually seeing him closer to home at my local hospital, rather than travelling into Anne Rowling because I stay quite a distance away. I’ve on my met my neurologist once and ms nurse twice, they’re lovely people but I can’t help but feel like they’ll be annoyed with me when I bring this up: I’ll be saying that (1) I don’t think I have MS and (2) I don’t want the treatment you recommended. It makes me look like a big hassle to them but at the same time I just want to be absolutely sure about my situation!
My scans weren’t over as long a time period as yours, but I find it weird that Scot NHS don’t require lumbar punctures. It’s comforting that we don’t need to undergo the discomfort but weird because it provides so much differential diagnostic info.


itsmewithms
2 weeks ago

When I asked my Neurologist if there would be an advantage to me if I had a LP at this point but he said my MRIs through the years (probably have had 25 of them through the years- or more) and said it was unneccesary and it they were pretty definitive.

If they are definite you have MS and are treating you for it than a LP may be redundant…but if they still aren’t willing to lock into a diagnosis ask them what else need to be done…by whom and when…they owe you at least that


highlander
2 weeks ago

@keepsmyelin99
This is the method that’s supposed to be used in the UK to diagnose MS 100%.
Hope it gives you more insight.

https://www.mstrust.org.uk/a-z/mcdonald-criteria


nutshell88
2 weeks ago

in my case i dont think its about that when i thought about it remembered my aunt has it so its genetic..🤐


keepsmyelin99
2 weeks ago

Thanks @itsmewithms – I’m currently unsure if I have an official diagnosis or a working diagnosis of MS. And that’s what’s bothering me. Because I know I haven’t had tests that eliminate MS mimics like neurotoxicity and ADEM.

It’s strange that you should bring up the McDonald Criteria @highlander – as far as I can see, they would only be able to classify my case as CIS. I’m definitely going to have a conversation with my neurologist and ask about diagnostic criteria, tests, causes, treatments… as thankful as I am that I was investigated so quickly and that my suspicions were listened to, I really don’t want any stone unturned when they correlate so closely with my experience. I know the internet can be a terrible place for picking up worries but it’s also useful to let us learn about what is going on.
I know my body well and that’s what got me here. I can’t help feeling that understanding my body a bit better might lead us more towards ADEM…

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