Sorry if I just posted an empty post, I pressed return too soon!
Just a little background. I have a condition called Cauda Equina Syndrome, 10 years ago (this week) i underwent emergency discectomy and laminectomy (sorry about spelling) but I was still left with a loss of sensation from the waist down, leg weakness and issues with the bowels and bladder. Life adjusting but I’ve managed to potter along.
Now CES shouldn’t be progressive I believe, but there is increased risk of it happening again and I do have issues with my discs in my lower back.
I’m seen yearly by a neuro just to keep a check on CES symptoms. Just over a year ago I seen a uro-neurologist as I started to have more issues with my bladder, I had a urodynamic test last summer with showed my nerves seem to have trouble releasing, so they suggested I self-cath on occasion, they would like me to have a sacral neuromodulation device put in but I’m not keen.
Anyway, at the time of having the urodynamic test I was also having dizzy spells and what I described as ‘goggly eyes’ and went to my GP who referred me to a neuro but at a different hospital to where I am seen for the above. I was seen by a lovely lady who was a little bit dismissive but referred me for a brain MRI just to be able to determine there was nothing and to then refer me to ENT for possible vertigo.
I had the scan at the beginning of July and didn’t really think of it again and assumed because I didn’t hear anything that it was clear. Then in October I went back to my GP as I was still getting the dizzy spells and had also started to get a crawling, pins and needles feeling up my spine and across my head. I am also having more trouble than normal walking and more pain and heaviness in my legs and my GP assumed this was from the CES. It then transpired that the MRI shows an inflammation on my brain.
I was finally seen yesterday by another neurologist, he specialises in MS and has said that he thinks ‘I probably have MS’. He is now going to do more brain and spine MRI’s, nerve tests and a lumbar puncture, to in his words, ‘get me sorted and started on treatment’. He also suggested that a lot of my CES symptoms may in fact be MS and the new crawling, pins and needles symptoms are almost certainly MS.
His words have thrown me a little and I wonder in your experiences has he jumped the gun a little by actually throwing MS out there. I’m also petrified of the LP due to the issues with my lower back, although he his writing to my CES neuro regarding that.
So sorry for the ramble, I just got knocked a little as I hadn’t even really thought about MS until now.
Many thanks for reading