Doctor 95% sure I do not have MS

[Tigerlilly81]

She is not sure what is causing the lesions or my muscle twitches and spasms, inner tremor, balance issues and vertigo. So she wants to do VNG, Evoked Potential, and cervical MRI. But at this time she said, without the oligoclonal bands, she is 95% sure it is not MS.

So, no MS but something is causing my issues. Some of which are visible to the naked eye like my muscle fasculations and spasms. I am trying to not let it get to me.

[Kenu]

Have you had the spinal tap 🤷🏼‍♂️. Just curious if that’s been done ✅. Ken 🐾🐾

[Tigerlilly81 in reply to Kenu]

Yes. It showed a mild elevation in total CSF protein but no Oligoclonal bands.

[greaterexp]

I know of a couple of us on this forum who did not show the oligoclonal bands, which seems to happen in about 5-10% of cases. Nevertheless, we clearly have MS based on other factors. I hope you do not have MS, but I'm glad your neurologist is doing other testing to either confirm those thoughts or not. There are many other diagnoses in which we see similar symptoms. I have a friend who has some of the same issues as I, but who was diagnosed with vascular Parkinson's disease. Without further testing it would be difficult to get the right treatment.

[Frances_B]

The limbo land of uncertainty is never a nice place to be, but at least your Drs appear to be fairly thorough. What eventually happened with the B12 stuff your Drs couldn't agree on about 3 years ago? (you posted about it on the PA forum). Has it been re-tested as part of the recent/current batch of tests you've been having about possible MS? I'm also a bit surprised that given the uncertainties/inconsistencies she's not getting your thoracic spine scanned as well as your cervical spine.

It's actually up to about 20% of PwMS who don't show any oligoclonal bands in their CSF from a lumbar puncture, and some who do have some bands don't have MS, which just all adds to the complexity of getting an accurate diagnosis.

mstrust.org.uk/a-z/lumbar-p...

[Tigerlilly81 in reply to Frances_B]

Yep, they retested and I went to a hematologist for a third opinion. He agreed that I had pernicious anemia and would require regular b12 shots, but would also need to check my b12 a few times a year. I have considered my b12 being the primary cause of my symptoms but I have kept my b12 up and things do not seem to get better. And low b12 doesn't cause the vertigo I have been experiencing. I have been told I have vestibular migraines.