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??