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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Hi Scarlett,
I had optic neuritis in July 2024 and never regained my sight in my right eye. I have lesions in my brain and signs of demylineation in my spine. I have constant severe headaches and vertigo and also have bladder incontinence. This is all since my optic neuritis episode. My lumbar puncture was also clear and therefore my neurologist has said it is not MS. I was referred to a cardiologist as they thought it might have been a stroke or blood flow issue and now all tests from there are back clear as well. As much as Im glad obviously everything is ok I am still a different version of myself and feel something isnt right so I understand your ‘limbo land’ feeling!
I wish you all the best,
Laura
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That’s some limbo state you’re in there, Laura. That must be very hard for you to deal with and hard for you to know what to do with that information - or lack of it. MS is no picnic, but at least it’s something that friends and family and employers have heard of, and also something that has a range of drugs that can help slow it down at the RRMS phase. There isn’t anything else good to say about it, but it does have those things.
There’s obviously something very amiss with you, and I wish you well as you wait to find what it is and what is to be done about it. I hope that you don’t have to wait for too much longer to get a diagnosis of whatever and a treatment plan in place.
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Hi Alison,
Yes its certainly been a roller coaster! I am at that point where I feel like a hypochondriac and am actually fed up listening to myself complain! They have taken my case to a multi disciplinary meeting so I have an appointment on 13th November to hear the outcome of that so who knows maybe someone has figured it out!
Thanks for the kind words,
Laura
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Doctors love an interesting case, but it isn’t much fun being one! I remember many years ago a neurologist briefly wondering whether I had some terrifically exotic thing - can’t remember the name - and I’ve never seen him so animated. Turns out it was bog-standard MS after all for me.
Anyway, it’s good to know that you have lots of big brains working on your case.
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Hi Laura, sorry to jump back in late again. well, your appointment is due in just a few weeks now - I hope it goes well for you
as @alison100 says, They sure do like an odd case. I was diagnosed with a brain tumor in 2023. it was a big lesion that squashed my brain in 2024 then, after a brain biopsy and 3 clear lumbar punctures they diagnosed me with clinically isolated syndrome. then, after loads of meetings and waits and a few seizures, They diagnosed me with RRMS and Epilepsy earlier this year. now, it’s blood tests, vaccines and meetings before I’m put on a disease modifying therapy alongside my antiseizure medication. they’ll get there soon enough. I prefer to have blue cheese in my fridge than a DMT anyway 
I hope you get an easier go
consider yourself as part of a chosen few - not many get to experience this mad ride. You lucky lady you 
maybe plan to go out somewhere nice, perhapsfor dinner - Something that will make you smile
appologies for the dodgy sense of humour but, that’s always been here 
I wish you the best 
x
Jon.
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Hi @jthatcher ,
Oh my goodness I thought Id had a rough ride but it sounds like yours has topped it! Yes, Im hoping that something comes from the MDT meeting but the truth is I have an inkling it’ll be another ‘watch and wait’ outcome!
Its hard to keep pushing it to the back of my mind as noone really understands how it feels unless you’ve gone through it yourself so I just keep the smile on and hope for the best!
I will keep in touch with an update!
Take care,
Laura x
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ah, I’ve got it no worse than anyone else in here mate - Same crappy boat, same dodgy paddle. there’s always some poor bugger worse off. I think it’s a bit easier if we can find some humour (not always easy) in our own situation. I think what this place needs is a load of us in the pub one night swapping war stories and laughing - I can imagine that being a very good night and a briliant mood lifter
those wait and see times are great aren’t they
I undestand why they have those MDT meetings but, I’d love to be a fly on the wall to see what really gets said
please do keep in touch with an update - it’ll be great to hear how you’re getting on
I hope you’re having a good weekend x
Jon.
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