Getting Closer to DX

[PeterL25]

Hello! I have been having neuro symptoms for the past 10 years since I was 26 (36 now). On and off numbness and tingling that would last for weeks at a time, vision issues, heat intolerance, etc. Gradually, my ability to walk has diminished as my legs begin to feel like jelly after 10+ minutes of walking. Last year I had my first major episode. I woke up one day and couldn't see very well or look at light. Over the next week I developed right sided numbness and electrical vibrations, L'Hermittes, balance issues, bladder issues, drop foot, etc. Went to ER, they checked me for stroke and then sent me home. Finally saw MS specialist and he did a full workup. All of the MS mimic bloodwork came back clear. MRI's show one cortical brain lesion, one cervical lesion, and one thoracic lesion. Lumbar puncture showed high Albumin and protein in CSF but had "matching" O-bands. No unique bands said to mean "systemic" possibility of demyelination however, I am negative for all systemic disease testing. I have a follow up with neuro in a few weeks but waiting makes me anxious. I just want to know what is going on. Does this seem like MS?

[supermum_ms]

Hi and welcome,

MS could be possible but it may not be the most likely possibility with your brain and spinal cord MRI results, a neurological condition like MS would definitely be high on your list of causes though, so please try to stay open minded if you can for a little while longer and dont be surprised if you still need the visual and nerve conductor tests done to narrow your list of causes down further.

1 cortical brain lesions isn't outside of normal expectations, if its tiny or micro sized its more likely normal but your spinal cord results are definitely showing the most likely explanation for a lot of your symptoms because spinal cord lesions are not normal, ever!

I get the impression these symptoms have been both sides of the body, i'm getting that idea because its ultra bizzar to suddenly loose sensations or experience strange sensations down only one side of your body and id of expected you to mention it if your symptom pattern was unilateral - only happening in one side. Now if it is a bilateral symptom patter - both sides - then MS moves a little down the list and conditions like Transverse myelitis (TM), Neuromyelitis Optica, Myelitis attacks with neuromyelitis optica spectrum disorder (NMOSD) etc get moved higher.

"In some people, transverse myelitis represents the first symptom of an autoimmune or immune-mediated disease such as multiple sclerosis or neuromyelitis optica.“Partial” myelitis—affecting only a portion of the cord cross-section—is more characteristic of multiple sclerosis. Neuromyelitis optica is much more likely as an underlying condition when the myelitis is “complete” (causing severe paralysis and numbness on both sides of the spinal cord). Myelitis attacks with neuromyelitis optica spectrum disorder (NMOSD) tend to be more severe and are associated with less recovery than attacks with multiple sclerosis."
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Transverse-Myelitis-Fact-Sheet

I wont go into all the reasons why not having unigue Obands rules out a neurological condition like MS, the protein that showed in your LP isnt normal but it isn't specific enough, LP results are useful when the results can be value added to all the other test evidence though.

Have you seen an opthalmologist yet?

Hope that helps a little.....JJ

[PeterL25]

Thanks for the reply. My numbness and electrical shock sensations were one side only. Previous events of numbness were one side only as well. They described the lesion on the brain as "an area" so I assume it's an area opposed to a tiny spot. The cord lesions are horrible as they give me the Lhermittes which really impacts my life. I can't even pick up my kids because it triggers it.

[supermum_ms]

Its sounding like MS could be more likely than something like TM if your spinal cord symptom pattern are unilateral, its MS that more commonly causes a unilateral pattern because the lesions are typically smaller, and dont traverse the cord like the bigger TM lesions do.

I think your neuro will be looking more closely at MS as the cause but there are still a few more tests you'll need to go through before you'll get more clarity in what you've been dealing with for hte last 10 years, so hang in there!

Cheers......JJ