the dreaded normal MRI: Hiya! So I... - My MSAA Community

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the dreaded normal MRI

quinq profile image
quinq
β€’9 Replies

Hiya!

So I experience quite classic MS symptoms according to my neurologist (paraparesis, ataxia, fatigue, babinski sign, lhermitte's sign, clonus, muscle power impairment, some minor visuospacial stuff as well), yet my MRIs have both come back normal.

Neither of us can think of anything else that would cause my symptoms, but he says that MS literally is lesions on the spine and brain and i don't have any, so i can't have MS

is it possible to have MS without lesions?

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quinq profile image
quinq
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9 Replies
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Kenu profile image
Kenu

Have you had a spinal tap and blood work πŸ€·πŸΌβ€β™‚οΈ I had read in rare cases you can have lesions where they cannot seem themπŸ€·πŸΌβ€β™‚οΈ Wish you well and let us know how it goes πŸ‘πŸ™πŸΎπŸ© Ken

Raingrrl profile image
Raingrrl

Hi quinq ...sorry you are finding yourself in diagnosis limbo land. We aren't doctors here so can't really answer your question. Kenu has a good point. Sometimes a spinal tap with coordinated blood work can be indicative of CNS damage caused by M.S.

You certainly don't want to take the powerful M.S. drugs if you don't have M.S. I sure wouldn't take the risks we do with the newer drugs if I wasn't sure I had the disease. There is no single test to diagnose M.S. as you probably know but there is a specific criteria called the Revised McDonald Criteria published in 2017 that is the gold standard to diagnose M.S. There are multiple diseases that can mimic MS. Here is a link to the National MS Society's list of those: nationalmssociety.org/Sympt....

Good luck! I hope that your neuro is an M.S. specialist. They are the doctors that are most informed about the current research and treatments related to M.S.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Ghost lesions. quinq and Kenu and Raingrrl ? I have heard it mentioned once when I was admitted. But then they denied it. So idk

J🌠

RoseySawyer profile image
RoseySawyer

I think there are ways they can test you with blood work to tell you if you have MS or not and even what kind. I found out because I had hundreds of lesions and of course I was paralyzed for a couple of months two weeks afterward my diagnosis. I hope all goes well for you. MS has changed my life.

agate profile image
agate

quinq , I've been reading MS boards for quite a number of years, and yes, it is indeed possible to have MS without having lesions showing up on the MRI. It's rare, and sooner or later lesions will start showing up usually, but it may be years later. Nobody seems to know why this happens.

ylimem profile image
ylimem

I have familial spastic parapresia as well as/instead of MS. My brother, my cousin and my aunt have it. It's rare but has the same symptoms without the lesions. I have been treated for fsp for years (the genetic test to confirm is super expensive) I didn't have lesions in 2013. Now I have a bunch. They think I have both. Something to look into anyway

CalfeeChick profile image
CalfeeChickCommunityAmbassador

quinq Lots of good comments above. I know one thing I would ask the doc or someone that may be in the know. What is the Magnetic strength of the MRI machine used and did you have the MRI without then with contrast dye. I learned early on the strength of the MRI machine is very important to get a quality reading. Hope you get your answers.

Kevin_McMillan profile image
Kevin_McMillan

Quinq are there really none or non specific lesions?? I had 14 when first diagnosed but I had to go to Seattle, Portland showed 5 but likely migraine which i didn't get. But it showed some some others but they called them artifact on the spine. One was noted to be there in by a doctor in 1995. On the conus. My optic nerves were lit up too and looking sick! I have punctate deep white matter lesions in both frontal lobes. This clinic is now trying to undiagnose me now that I'm going to a new doctor. They are a bunch of idiots so far behind. The director has his thumb on all of the puppets and they can't read an MRI to save their asses. All of their machines are dated too. It is supposed to be the best clinic in Oregon. We're pathetic then!πŸ˜‰

Patricia2015 profile image
Patricia2015

Your symptoms can be caused by a MS mimicker like APS or SLE.

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