Hi,
After a 3 month wait I was told on Friday that I had a clear lumbar puncture and therefore don’t yet meet the criteria for a diagnosis. I had optic neuritis in June which followed a mri that showed brain and spine lesions.
They now want to repeat the mri in the next 3 months. Just feel so frustrated and back in limbo land. Still don’t have a full recovery from the optic neuritis and have some other symptoms as well as permanent fatigue. I guess what I’m asking is has anyone else been through similar? Should I be asking for a second opinion? Or am I barking up the wrong tree and maybe I don’t even have ms?
Thanks in advance for any advice.
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Hi Scarlet.
It does seem to be a waiting game where sometimes it will move along quickly then grind to a halt again.
I suppose the results from your lumbar puncture are kind of good news because, as I understand, they test for a whole bunch of stuff, not just the Oligoclonal bands.
I’m told that they’re discussing my tests and scans this month and, will write to me next month. I have brain lesions but, also not enough going on to be given an MS diagnosis which, to be honest, suits me fine. I’m hoping to be told that it’s all been a horrible mistake so, go back to work 
I also get that horrible fatigue - I think all you can do is keep yourself well rested and nourished and try to stay positive.
Good luck with yours and, have a great day x
Jon.
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Hi yes I had MRIs of my brain and c spine with demylination and lesions found in both areas indicative of MS.
My neurologist felt I had MS for many years and just wanted a LP to confirm my diagnosis.
Unfortunately my LP was inconclusive.
I was diagnosed with “ probable MS” and was told it couldn’t be anything else , but I didn’t meet the Mcdonald criteria.
I was given access to a MS Specialist Nurse and had further MRIs every 6mths and then annually.
3 years later a new lesion was found and I was then officially diagnosed and started a DMT.
So yes you could have MS and also have a negative LP but it is quite rare I believe around 5% .
I know it’s a really difficult time feeling unwell but not having a confirmed diagnosis and not getting the treatment you may need.
I hope you get some answers and help soon. Take care.
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I’m not sure but I believe 5%- 10% of people with MS have a clear lumbar puncture test. Is it worth speaking to your neurologist about this along with the general view that the sooner you start treatment the better.
It’s a long time ago now (around 19years ) but I’ve never had a lumbar puncture and was diagnosed simply on the MRI and symptoms- Optic Neuritis
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