Not ms after 15 years diagnosed

Everyday living
1

Hi, I saw my neuro last week to chat about the results of an MRI I had in November last year as it showed ‘none specific spots’ in the brain that could or couldn’t be MS lesions.

I was first diagnosed in 2003 after a relapse put me in hospital, I asked for a second opinion as i couldn’t quite believe what I was being told. The 2nd opinion was in a completely different county with different doctors who confirmed a 2nd MRI showed white lesions in the brain consistent to MS which is what they were expecting to see, so diagnosis of MS confirmed.

I have stayed with these neurologist’s under their care for the past 15 years. Each yearly check up has been with ‘one of the team’ or usually a locum so I’ve only seen this consultant a few times, but he has been there from the beginning and is very good. I have tried Avonex, Gabapentin etc to help with the various symptoms of MS over the years and have got on with life as best I could, always thinking I’m lucky as I don’t have too much disability.

I phone my MS nurse if I need advice.

Over the years I have developed arthritis, Fybromyalgia and other bits and bobs that getting older brings.

I have lost vision in my right eye, an optician I saw many years ago showed me a picture of the optimax scan that showed tiny grey spots on my optic nerve which he believes is from optic neuritis from as far back as the late 90’s.

Anyway… during my appointment the consultant informed me that the very first MRI of the brain results (that clearly showed MS lesions in 2004) has perished over the years. My paper records have been shredded after the information was loaded onto the computer. However now it seems that results and information from appointments over the years wasn’t completely added with my notes onto the computer so a lot of information on how I have been doing over the years has been lost.

Now the Neuro feels I may not have MS as diagnosed 15 years ago but it could be symptoms of Fybromyalgia.

I thought the MRI might have shown a progression to SPMS as I feel that’s the way things are going, I don’t seem to be having relapses like I used too. I’m completely shocked to have gone back to ‘suspected MS’

If I want a clear diagnosis I need to go back to the beginning… MRI, Lumbar Puncture etc…

I feel so confused, thoughts??

2

I was diagnosed just over 5 years ago with RRMS, MRI scans and Lumbar punch confirmed the diagnosis.

My MS has steadily progressed over the years, I’m now SPMS, and I’ve had a good few scans over the years , however its only the very first scans that show 2 extra small lesions had developed on my spine, the brain has always stayed clear.

In total I have 3 lesions, none are active, yet as I’ve mentioned I’ve officially progressed to SPMS.

My MS symptoms are, without doubt worse now than they’ve ever been, yet I’ve not had any “stand out” relapses and the lesions are inactive.

My neuro thinks the very very first lesion I had was probably more than 15 years ago when I started getting tingling in my fingers and had an MRI to check things out, but unfortunately the neuro at that time didnt spot the tiny lesion in my spine and put the tingling down to Carpal Tunnel.

It wasnt until many years later when other odd things started to happen and I saw a different neuro who pulled up the very first scan from years before and spotted the tiny lesion, he then ordered new scans and saw the 2 extra lesions.

I think the point I’m trying to make is that the old lesions did the damage years ago and things have just steadily got worse, I don’t think you need specific relapses or active lesions to progress to SPMS, the damage is done to the nerves and they just deteriorate, and with time things have just progressed onto SPMS, if that makes sense ?

I might be wrong but that’s how it was explained to me, and that’s how I feel things have gone.

3

Hello

That sounds utterly shocking news. I am trying to imagine some neurologist telling me that I don’t have MS after 20+ years.

It does seem a bit strange that the MRI scans you’ve had over 15 years have been identical. Very small lesions with no change at all. Not that you need a certain number of lesions for MS, just that they should be clearly demyelinating and show dissemination in time and space. Therefore have appeared at different times and be in different places.

In terms of getting evidence that it is or isn’t MS, a lumbar puncture wouldn’t necessarily give you a definitive answer, but it might. Personally I’d probably go for the LP as it’s possible that it would confirm MS. A negative LP doesn’t mean it’s not MS (only 80 to 95% of people with MS have an LP that shows Oligoclonal bands in the CSF), but it might add persuasive evidence.

Best of luck.

Sue