Was referred to an MS consultant ant the Q. Elizabeth hospital 4 years ago following x 3 lesions detected on an MRI. What led me to the MRI was numbness / pins and needles in right arm. MRI also showed C5/C6 disc herniation.
No changes for three years, then last MRI (DEC 23) showed a new lesion.
MS consultant can’t diagnose MS as have had no symptoms. He has referred me to my local MS Nurse, who will be my main point of contact. No meds prescribed. So, 4 years on, I have no diagnosis, but am under MS team. Has anyone experienced this strange sequence of events?
Really not chasing a diagnosis ! but a couple of friends have recommended getting a second opinion. Next MRI will be in a years time.
So, in complete limbo land and a little frustrated now. Due to see MS nurse in 2 months.
To have an MS nurse with no diagnosis?! Should I just accept taht this will be a diagnosis somewhere down the line?
Age: 50 / female.
New to this site, any similar experiences would be welcomed.
Thank-Q.
Yes it’s frustrating, especially after a new lesion was found I can’t understand why the Neurologist didn’t diagnose MS ?
Definitely seek a second opinion.
Have you had a lumbar puncture?
My own story started 3 years ago. I felt unwell with various symptoms numbness, pins and needles , fatigue, brain fog , losing counciousness on a number of occasions and ending up in A&E.
I also have a sister with MS so recognised the symptoms.
My GP didn’t believe me and diagnosed anxiety and depression.
I saw a neurologist privately and had an MRI which found multiple lesions/demylination and I was diagnosed with " probable MS ".
Like you I was given access to a MS nurse straight away and transferred to my neurologist NHS list.
A Lumbar puncture wasn’t conclusive.
My neuro said he thought I had MS for a number of years but I didn’t meet the Mcdonald criteria.
I saw my Neurologist annually and had a MRI every year.
It wasn’t until my latest MRI found a new lesion that I met the Mcdonald criteria and was diagnosed with MS and started a DMT.
I would challenge your neurologist and ask them why you’ve not been diagnosed if you meet the criteria and see a MS specialist if you can .
Take care and good luck.