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Hello! Newbie looking for words of wisdom :-)

Hello all

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

Livvy

xx

Hello Livvy

Welcome to the forum

I am not one for writing long post’s I’m afraid but others are and I’m sure they will be along soon.

Just want to point out to you, that you DO NOT have to have a lumbar puncture, or any other tests for that matter…totally up to you. A lumbar puncture is an invasive procedure and something that the patient consents to.

I have had a lumbar puncture and I have to say, everything went just fine

If you decide to go ahead and have one. Make sure it is done by the consultant. Do not let a student doctor ‘have a go’. He/she can practise on a dummy…not you.

Take care

xx

Hey Blossom

Thanks for the welcome.

Thanks for the advice as well, I did initially say no to the LP but the consultant kind of talked me round, but then when I went home and thought about it again I wondered what use it would serve at the moment.

I shall have to ponder on that while I wait for the appointment to come through. His intention is to have me in for a day and do all the tests in one day eek!

Thanks again

Livvy

xx

Hi again Livvy

It does sound like you are being well cared for. It would be good to get all your tests over in one day.

So stressful isn’t it, having to make these decisions.

I hope you have a good support network around you.

X