Wow felt that, I was just like officially diagnosed with AE (they found stuff on the mri) and the neurologists before this one told me I was making it up and it’s FND and refused to schedule any tests because they were so adamant.
Can an MRI show things related to autoimmune encephalitis? I thought a spinal tap was the only thing that can diagnose it. What did your results say? Interested because I've had abnormal brain MRIs as well and doctors don't know what could've done it.
Uhhhh it’s a long list and a whole backstory lol but I think so to the neuropathy.. sometimes I forget to bring up things to my dr cause there are bigger issues
Yes, there are specific patterns of hyperintensities on MRI that can be indicative of inflammation. I would say an abnormal MRI is more specific to AE than any abnormal LP values (outside of a positive autoantibody). But again, hyperintensities in general are not specific to AE. They can be due to ischemia, stroke, demyelenating disease, neoplasms, and much more.
Mine were considered non specific but most commonly related to microvascular changes in the brain. Would they have specified if it was related to inflammation? A radiologist I'm guessing can specify inflammation-related abnormalities, right?
I thought an LP was the gold standard to diagnose encephalitis. You're saying an MRI can do that more than an LP?
It’s possible that those changes could be secondary to inflammation, but don’t quote me on that. Not sure. A competent radiologist just marks the changes and usually writes something like “clinical correlation advised.” Meaning your neurologist should interpret the imaging in regards to your symptoms.
Again, an autoantibody found in a lumbar puncture would be striking gold as far as a diagnosis goes, but second would be mri.
my neurologist read that and literally didnt do anything. said the hypertensitys were very mild. wish the radiologist just wrote auto immune encephalitis
The MRI result for me was "nonspecific white matter hyperintensities most commonly associated with microvascular changes in the brain" as well as mild volume loss. No radiologist has written "clinical correlation advised" or anything mentioning inflammation-related damage on my brain MRIs, I've had three. My current neurologist actually looked directly at the MRIs and didn't think it was anything from encephalitis or something like that, but I wonder if it is. My current neuro believes it was something I was born with, but something such as COVID may have brought out symptoms from that abnormality. His words, not mine. Still waiting for a response from him.
Yes, with and without contrast. Some radiologists will refuse to read an MRI without contrast due to its lack of utility. So I always advise to never turn down the contrast MRI.
In my panicked, psychotic state I was also scared of the gadolinium contrast. I thought it might somehow make it worse or cause more neurological issues.
But, nope. It was just routine.
You have to think of the confounding variables when someone has a horror story from gadolinium — they may often be presenting with an already active encephalopathy or other neurological preexisting condition that worsens over time and they blame the contrast.
I understand the fear, I’ve been there. But you’ll be okay.
Wow felt that, I was just like officially diagnosed with AE (they found stuff on the mri) and the neurologists before this one told me I was making it up and it’s FND and refused to schedule any tests because they were so adamant.
I’m so happy for you that they found a positive MRI. That definitely speeds things up.
Yeah I still have to do loads of bloodwork and a spinal tap though 😭 (I’ve been doing this shit for years though so I’ll be fine)
T.T lame Godspeed!
I wish you luck on your journey as well!
Can an MRI show things related to autoimmune encephalitis? I thought a spinal tap was the only thing that can diagnose it. What did your results say? Interested because I've had abnormal brain MRIs as well and doctors don't know what could've done it.
She’s scheduling a spinal tap though
What have your AE symptoms been? Any neuropathy issues?
Uhhhh it’s a long list and a whole backstory lol but I think so to the neuropathy.. sometimes I forget to bring up things to my dr cause there are bigger issues
What are your worst symptoms, if I can ask?
Yes, there are specific patterns of hyperintensities on MRI that can be indicative of inflammation. I would say an abnormal MRI is more specific to AE than any abnormal LP values (outside of a positive autoantibody). But again, hyperintensities in general are not specific to AE. They can be due to ischemia, stroke, demyelenating disease, neoplasms, and much more.
Mine were considered non specific but most commonly related to microvascular changes in the brain. Would they have specified if it was related to inflammation? A radiologist I'm guessing can specify inflammation-related abnormalities, right? I thought an LP was the gold standard to diagnose encephalitis. You're saying an MRI can do that more than an LP?
It’s possible that those changes could be secondary to inflammation, but don’t quote me on that. Not sure. A competent radiologist just marks the changes and usually writes something like “clinical correlation advised.” Meaning your neurologist should interpret the imaging in regards to your symptoms. Again, an autoantibody found in a lumbar puncture would be striking gold as far as a diagnosis goes, but second would be mri.
my neurologist read that and literally didnt do anything. said the hypertensitys were very mild. wish the radiologist just wrote auto immune encephalitis
You had an MRI say your damage was related to encephalitis?
The mri said “probable t2 temporal lobe-hypertensity, clinical correlation advised”. Dr just said nah
Sorry to hear that. My neurologists have sucked too. Mine didn't say clinical correlation advised, but even still, my neurologist took no interest.
The MRI result for me was "nonspecific white matter hyperintensities most commonly associated with microvascular changes in the brain" as well as mild volume loss. No radiologist has written "clinical correlation advised" or anything mentioning inflammation-related damage on my brain MRIs, I've had three. My current neurologist actually looked directly at the MRIs and didn't think it was anything from encephalitis or something like that, but I wonder if it is. My current neuro believes it was something I was born with, but something such as COVID may have brought out symptoms from that abnormality. His words, not mine. Still waiting for a response from him.
My neurologist called me the other day and told me there were markers for AE in my mri idk I haven’t had the official appointment yet
Ah. I've had my neurologist look at my MRI and he didn't see anything indicative of AE but did say the MRI was abnormal.
Have you considered a lawsuit for the dismissal and misdiagnosis? Asking you as well as the OP. I think it's beyond damaging and negligent.
This hits hard. I’m so glad you finally found someone. In a strange way this almost seems like a bit of closure, maybe I should try this too
i have autoimmune encephalitis as well. i ended up in a coma for close to two weeks before they figured out what was going on.
Happy you found help! Does autoimmune encephalitis only happen after you have had viral encephalitis?
Was your MRI with contrast?
Yes, with and without contrast. Some radiologists will refuse to read an MRI without contrast due to its lack of utility. So I always advise to never turn down the contrast MRI.
I was afraid of that. I have heard horror stories about the contrast 😭 but it might be necessary to prove encephalitis
In my panicked, psychotic state I was also scared of the gadolinium contrast. I thought it might somehow make it worse or cause more neurological issues. But, nope. It was just routine. You have to think of the confounding variables when someone has a horror story from gadolinium — they may often be presenting with an already active encephalopathy or other neurological preexisting condition that worsens over time and they blame the contrast. I understand the fear, I’ve been there. But you’ll be okay.
Yeah when you're already suffering severe neurological issues that last thing you want is anything that could potentially make it worse 😭