Two questions.. last year's brain MRI

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Re: Two questions.. last year's brain MRI

Postby Snoopy » Fri Oct 20, 2017 3:34 pm

This is the study regarding misdiagnosis of MS:
https://www.sciencedaily.com/releases/2 ... 163038.htm
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Re: Two questions.. last year's brain MRI

Postby LisaH » Fri Oct 20, 2017 5:42 pm


I don't understand how a conversion disorder could ever be misdiagnosed as MS since evidence on imaging (and/or oligoclonal bands) is needed. Isn't it extremely unlikely that someone would get an MS diagnosis based only on symptoms? I can see how a conversion disorder might be mistaken for MS initially because of similar symptoms, though. I was pleased to see that this neurologist ordered an "MS protocol" MRI because it's more likely to show lesions if I have any. I'm having the brain MRI first, then cervical, then thoracic. I was told that it might take up to 3 hours and I'm wondering if they'll allow a bathroom break between the scans! :-S :-\

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Re: Two questions.. last year's brain MRI

Postby Snoopy » Sat Oct 21, 2017 6:09 am

I don't understand how a conversion disorder could ever be misdiagnosed as MS


It is definitely concerning and brings into question the knowledge of the Neurologists who diagnosed MS in those cases.

Isn't it extremely unlikely that someone would get an MS diagnosis based only on symptoms?


If the Neurologist knows what he is doing and is following the diagnostic criteria then, yes, it would be highly unlikely to receive a MS diagnosis based on symptoms alone. Apparently some are not following the diagnostic criteria.

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I was told that it might take up to 3 hours and I'm wondering if they'll allow a bathroom break between the scans! 


Usually you will be asked if you are doing okay. If a bathroom break is needed just let them know. Contrast will be used after all of the MRIs are done. The contrast MRIs go much quicker.
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Re: Two questions.. last year's brain MRI

Postby Zyklon » Sat Oct 21, 2017 8:43 am

My first MS MRI test took almost 3 hours. Brain, cervical, thoracic, contrast. With new MRI center total duration is much shorter, 1 hour 15 minutes. I guess the machine is important.
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Re: Two questions.. last year's brain MRI

Postby LisaH » Sat Oct 21, 2017 6:34 pm


I now have access to the notes from the doctor (via patient portal) which include "bilateral positive Hoffman responses in the upper extremities" as one finding. From what I've read, this indicates the possibility of an issue in the cervical spine. She also noted a "distal pinprick gradient" because of the lack of sensation in my left big toe. Even though she's keeping the possibility of a "functional neurological syndrome" (her words) on the table, she stated that imaging of my brain and spine is indicated "to look for any evidence of demyelinating disease, or any other structural lesion of the spinal cord". I'm a bit irked at her suggestion of a possible functional disorder based mainly on (again, her words): "the evolution of her symptoms over time". Am I wrong to think this is strange considering the fact that MS (and many other diseases) presents uniquely for each patient? I've had symptoms that were quite bothersome but have since disappeared or lessened considerably (like the spasms in my torso and arm jerks). I've developed new symptoms that have become very pronounced (like my stiff, heavy legs). Does this not happen in MS and other diseases? What am I missing here? :confused: I'm trying to understand this so any comments would be appreciated.
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Re: Two questions.. last year's brain MRI

Postby LisaH » Sun Oct 22, 2017 6:32 pm

Any comments at all?
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Re: Two questions.. last year's brain MRI

Postby NHE » Mon Oct 23, 2017 12:57 am

LisaH wrote:Any comments at all?

Yes. So it's been a little over 5 months sine you've shared an MRI depicting a large four leaf clover shaped cyst in your head. Are all of your doctors aware of this? It's difficult to imagine that a cyst of this size is not causing some type of symptom! If some doctor suggests you have conversion disorder or something related, then hand them a printout of that MRI and ask them if they think you imagined that!
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Re: Two questions.. last year's brain MRI

Postby LisaH » Mon Oct 23, 2017 6:15 am


Yes, NHE, they're all aware of it and all but one say it (and the chiari) are incidental findings. The first neurosurgeon that I was referred to said "I'm not the doctor for you. You need to be in a university setting." He pointed to the screen where my MRI was loaded and said "This is a pituitary tumor". When he referred me to a "university" neurosurgeon, I was told that it was just an arachnoid cyst and quite harmless. I was referred to a neurologist for my head pain, diagnosed with occipital and trigeminal neuralgia. The neurologist agreed that the cyst is incidental and doesn't correlate with my symptoms. Because the cyst compresses my optic chiasm, the neurosurgeon also referred me to see my local eye doctor to make sure everything was okay there. I ended up with abnormal visual field tests and even an abnormal VEP test. I eventually ended up at the neuro-opthalmologist who found mild RNFL thinning on the OCT scan but didn't seem very concerned. He dismissed the VEP findings because he prefers OCT scans. My neurologist referred me to the movement disorder center because he couldn't come up with a "unifying diagnosis". Now I'm awaiting 3T MRIs of my brain and spine which I hope will reveal something to explain my symptoms. :sad:
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Re: Two questions.. last year's brain MRI

Postby NHE » Tue Oct 24, 2017 11:17 pm

OK. Thanks for letting me know. I'm not a neurologist, but it seems that your doctors might be getting worried about the possibility of ants in your kitchen cupboards when there's what appears to be the proverbial elephant in the middle of the room.
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Re: Two questions.. last year's brain MRI

Postby LisaH » Wed Oct 25, 2017 6:06 am


You could be right. I've wondered if the cyst/tumor was dismissed as incidental too quickly. After the pituitary/sella MRI in June, the findings about what it is changed as well as where it originated. That alone set off alarm bells for me because the neurosurgeon couldn't even say with certainty that it isn't a tumor! The fact that it hadn't grown in 7 months told them that it's "stable" for now. The neurologist doesn't feel that the location of the cyst/tumor correlates with my symptoms. Maybe that's true. I'm hoping that something shows up on the 3T brain MRI that will provide more information about what's going on with me. This will be my first MRI of my spine so I'm very anxious to see what that might show. I just want answers and I truly believe it's physical instead of "functional".
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