Hi, this is my first post and just after some advise.
Out of the blue in June I developed optic neuritis. Due to this I was sent for an mri which found 2 lesions in my brain and one in my spine. I then met with a neurologist who said the next step would be a lumbar puncture. However now I have been sent another consultant appointment before having a lumbar puncture which has confused me as she said she wouldn’t see me again until she had the results? So i guess what I’m asking is has anyone been diagnosed with ms without having a lumbar puncture? Other symptoms I have are tingling in my hands and feet, itchy skin and fatigue which I had been putting down to other things.
Any advice would be appreciated.
Thanks
Yes, 8 years ago I was diagnosed with PPMS with only MRI a medical history and a detailed physical examination.
Hi, yes I was diagnosed without lumber puncture and just from MRI’s, however I met the criteria for dissemination in space and time, i.e had had more than 1 known relapse over time. So potentially however you have presented with symptoms you could get diagnosed from what they already have evidence of.
Yes. Diagnosed after Optic Neuritis and an MRI which revealed ‘ quite a few ‘ lesions ( I’ve never asked how many).
I would think about phoning the consultant’s secretary to ask just that about the timing.
I am sorry that you are having a very worrying time and the last thing you want in this confusing new world is muddle about NHS appointments, but sometimes it’s worth just checking that things are happening they way they’re supposed to be.
Hello Scarlet, yep I was diagnosed after repeated bouts of optic neuritis without a lumbar puncture only a MRI back in 1990. The MRI showed details in my brain that a lumbar puncture couldn’t possibly know. MRI scans were not done as standard by the NHS at the time, and I had to wait a very long time for it and had to travel to St Mary’s in London even though it wasn’t my local hospital or even the nearest big hospital (there’s two closer big hospitals between me and them) but I suffer very badly from phobia relating too having procedures so scans aren’t invasive and don’t require any kind of anaesthetic so I was prepared to go with it.
Thanks for everyone’s replies.
Unfortunately, despite me phoning up to check about the appointment it was a complete waste of time as the consultant thought I’d already had the lumbar puncture so now I’m back to waiting to get this done. Feeling really frustrated and that I’m going around in circles. Also i go to two different hospitals for the optic neuritis and neurology and they don’t seem to be talking to each other so I am having to tell them what has happened at each appointment. Just feels like a bit of a battle at the moment!
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Hi, I was diagnosed after optic neuritis which actually ENT department picked up on after having problems with my hearing after I felt unconscious at home and reoccurring UTI. The other symptoms I had experienced for years were put down to nearly 2 decades of stress and unhealthy environment I found myself in.
ENT consultant sent me to have MRI done straight away and the result suggested MS. I was very surprised that my GP gave me a call once the scan results been shared with him as I was visiting him very frequently about one symptom or another as it got very bad in late 2018 and early 2019. I was lucky I have seen a neurologist some weeks after my initial MRI. I had to have tests including visual evoked potentials and lumber puncture to get a rubber stamp to confirm the initial diagnoses. After these I have seen another neurologist who explained to me that I’ll be contacted by MS nurse to discuss treatment options. But it was only after covid, at the beginning of June 2021 I have started DMT.
To answer your questing is, yes, you need the lumber puncture. I believe with the finds / lesions in your brain and spinal column hand in hand with the symptoms you are experiencing will determine the type you the treatment NHS will offer. But this my believe and understanding I have gain over the years.
Please, try to relax and rest as much as you can, it should alleviate some of your symptoms while you are waiting for any tests and appointments.