Is Limbo Nearly Over??!!

Hi everyone,

My last post was 25 January (for anyone wishing to refer back to it) When I had just had repeat MRI and letter from MS Specialist saying I would be revewed in due course as no new activity/lesions. I had been given verbal dx of MS in October by another Neuro who then referred me on to MS team, but MS Neuro was noncommittal. To fast forward, he basically said he wanted to rule out some other things first.

So, current situation : MRI in July 18 showed 2 spinal cord lesions,one enhancing, one older. LP showed positive for O Bands in CSF only. Ruled out - Lyme Disease, Vit B12 Deficciency, Anti MOG & Aquaporin4 negative. Basically enough, with history and clinical presentaton in July, for a confident diagnosis from one Neuro.

MRI in Jan = no new activity.

Have kept a note of any ‘symptoms’ since then - nothing particularly new but an insidious worsening of burning pain in leg spreading to hip, plus itchiness ‘inside’ my lower back, and cramps (spasticity?) in legs plus involuntary flexing of feet when at rest (spasms?), continued unpredictable bladder, plus continued lack of sensation in saddle area and random really sharp stabbing burning pains everywhere, plus funny numb/pins and needles in wrists and hands.

Most of these are things I’ve had before to some degree but are now constant , the worst being the burning ain and night time spasms.

Neuro secretary rang me today with cancellation appt for tomorrow which is fabulous, but I really need to get the most out of this appt and hopefully find out what I’m dealing with!!

So, no idea what to expect.

Any thoughts on what I should be asking?? (apart from the obvious - “What have I got”!!)


Minnie xx

Aw Minnie

I didn’t see your post yesterday. I switch off generally by 9pm, or even earlier.

I do hope your appointment has been OK, useful, diagnostic even. It does sound like neuro #1 was following the McDonald Criteria to the letter, but clearly MS specialist wanted more.

Let us know how it went.