Hi Emmalou. Sorry to read that you’re having a tough time in Limboland.
The diagnosis of Multiple Sclerosis does require a very careful and individualised approach because MS can present with a variety of symptoms and mimic a variety of conditions. Your diagnostic testing seems to have been thorough, but you don’t mention whether you have undergone Evoked Potential Testing.
That said, the MRI scan, I presume, of your brain, was clear, but you have a couple of lesions on your spine. When I initially read your post, Transverse Myelitis popped into my head. The reason I thought this was that an MRI scan for TM will show inflammation of the Spinal Chord which you have. TM also responds very well to IV Steroids, which you have.
The Neurologist clearly thought that you had experienced Clinically Isolated Syndrome (CIS)- a first episode of neurological symptoms that last at least 24 hrs and is caused by inflammation and demyelination in one or more sites within the CNS. This episode is a one off and may never be repeated. If so, that’s great news, although, it can be a precursor to MS later on. However, you have NO brain lesions, so you are actually at lower risk of going on to develop full blown MS, so don’t panic!
Personally, I would be very uncomfortable to take any medication BEFORE I have been clinically diagnosed with MS. That just doesn’t sound right. That’s like saying, we’ll treat you with chemotherapy even though you currently don’t have cancer.
A diagnosis of anything neurological needs to be made by an experienced Neurologist and before disease modifying drugs are considered, by one with experience of MS.
So, in concluding, I would be thinking:-
Could this be Transverse Myelitis. If not, why not?
Should I be considered for an Evoked Potential Test? If not, why not?
Sorry if I have waffled. I get a little carried away, sometimes!