Yes it’s that same dreaded topic of conversation, MRI brain or brain and spine or contrast/no contrast. I’m sure most of you remember my last posts but just to recap if you don’t.
I’ve had various symptoms since Oct last year (parasthesia, bladder retention, bowel, swallowing issues, pain etc). My neuro initially sent me for full bloods, MRI brain and spine with contrast as well as an emg. My MRI showed a few lesions which he said wasn’t really conclusive and told me to forget about it and review in a few months but he’d do a LP and EVP if things worsened or progressed.
My pain of a neuro then at my follow-up told me I had to just get on with it and ignore my symptoms and when I asked what had happened he said I’d definitely had an episode of spinal inflammation. He then said he was going to send me for another brain scan but no LP or EVP. I’m keeping it quite light but I almost walked out crying because my neuro was so confrontational and accused me of being a pessimist.
I think I had a new episode of symptoms about a month back that lasted a week also(MS hug and parasthesia flared up).
I’ve now had just a brain MRI but with no contrast. How is that comparable to my last one and how is he meant to see any active/new lesions without contrast? When I asked the radiologist she said the doctors specifically put no contrast! Secondly he tells me I’ve had an episode of spinal inflammation even though my spine MRI looked fine so why isn’t he repeating that too!
I’m frustrated and just need to vent. I work for the NHS and it’s fantastic and works wonderful at times and at other times its a complete joke. I feel like going for my MRI was a complete waste of time and that I’ve got no further.
Reemz
aww bless you Reemz xxx same old flipping story eh!!! To me - if someone presents with these types of symptoms there should be a standard, set, systematic protocol for ruling things in/out!! There could well be one and I don’t know about it??? xxx
So sorry you are no further forward after all this - it’s my worst nightmare xxxxxxxjenxxxx
Thanks Jen - it’s just so frustrating. You’d think there would be some kind of protocol wouldn’t you. It seems like most neurologists just pick and choose what they want to do almost. I’m waiting for my result and then will decide whether I want to get myself a second opinion.
You sound like you’ve got a good neuro so fingers crossed you won’t have the same issues.
X
It won’t help explain his awful bedside manner (grr!), but I can guess at the scanning stuff for you…
He knows it was spinal inflammation from your symptoms and probably your clinical exam results too, but spinal MRI is rubbish and often doesn’t show up inflammation even though we know it’s there. (That’s probably the reason he’s not bothering to repeat the spinal scan too - it will probably just be more of the same.)
The two brain scans are comparable in that both of them are of your brain and done with the same technique. Any new lesions means that whatever you have is not transient (and points towards MS). Any improvement supports it being something like ADEM and rules out MS.
I can’t really explain why he didn’t listen to the hug episode. The hug is caused by spinal lesions. I guess he either didn’t think it warranted investigation, he thought it wasn’t a relapse (did you have a virus or infection or something at the time?) or he didn’t believe you. Hmm!
Fingers crossed the MRI adds new info at least.
Karen x
Hi Rizzo
thank you for your feedback. How much better would it have been if the neuro actually talked through and explained something like the above to me! I would have felt much more reassured at least.
The MS hug - I emailed his secretary who I then found out was on maternity leave. I managed to get the name of the woman who’s covering her and sent her an email so it’s written documentation but I heard nothing back.
I may actually chase up once and call once I see my results have come through. I’m quite certain it was a new episode as I’ve never had anything like it before - no illness or virus at the time.
A positive that I work in the same trust as my neurologist so at least can look at my own records and don’t have to wait for a repsonse.
Thanks again
Reemz
X