Private Neurologist

New diagnosis and before diagnosis
1

Hi,

I’m 56 y.o and I’ve had permanent balance issues for around 15 years and have been told I have everything from Labrynthitis to Benign Proximal Positional Vertigo. I stumble around, have intense fatigue.

2 months ago, I had a fall and symptoms that were believed to be Cauda Equina.

Lumbar MRI said no to that but still have numbness in both legs.

G.P refused head and neck MRI so I got them done privately which went on the credit card. Results were “multiple round and ovoid hyerintensities of periventricular area, distribution and morphology make MS the likely cause”.

Sent that to the G.P and they did a full neck and spine MRI which showed “areas of demyelinisation of cervical and thoracic spine”.

‘Urgent’ neurologist referral is 3 months time on the NHS, so got the card out again and booked private which is next week!

I am feeling a bit worried to say the least, I’ve looked at my MRI’s and it doesn’t look good, feeling cross that my GP has never taken me seriously and I had to pay to get some answers.

I wonder now what the private neuro will say and if it is MS how I then go about getting back into the NHS for treatment, since I certainly can’t afford to do that!

Has anyone else done this ‘hybrid’ diagnosis?

2

I also went private for my first MRI brain and c spine as my GP refused and put my problems down to anxiety and depression. MRI found multiple lesions brain and c spine and demylination indicative of MS.
I was then put on my Neurologist NHS list and given access to a MS nurse.
My Neurologist said he thought I had MS for a number of years.
Diagnosis was " probable MS" but it took almost 3 years of further MRIs until a new lesion was found and a formal diagnosis was made.
Hopefully you will now get the help and any treatment you need as soon as possible.

3

Hi Andy, Some similarities to me, balance issues for years but the thing that really set it off for me was pain in left leg I couldn’t walk I thought I had broke something…fast forward to MRI then consultant diagnosis of RRMS Spondylosis and query cauda equina,I’m actually off the bowel bladder clinic today as no sensation to pass bowel movement…which can be problematic. Anyway your on the radar now so hopefully it’ll start to ramp up with lots of appointments to various departments. All the best

4

Not me but I think you should be OK. Ask your private neurologist to refer you to the NHS - the chances are that he/she works for the NHS as well