After a lumbar puncture in march revealing that there are no antibodies i have been trying to get on with life, I’m taking 25mg Amatryptaline every evening which has helped with the pins and needles but i can have difficulty some days. This week i had an appointment with a different neurologist who did a nerve test shock i failed on my left toes and thumb, he showed me the MRI scan and explained my symptoms are due to the brain sending mixed messages to my body as there is fluid in my spinal cord. He took a blood test for NOM but stated he didn’t think it was this but was concerned it could still be MS so he was referring me to the MS clinic to see if they could do more tests to determine if it is MS and if not what is it. Can anyone advise what other tests they could do? I have now had MRI scans, lumbar puncture and a nerve test. Thank you
I’m afraid, after reading your post, I’m confused too. I don’t know what your neurologist meant about there being “fluid in your spinal cord” - as there is fluid in everybody’s. I’m unclear whether he was saying this was part of the problem, or just trying to briefly explain the anatomy. “Fluid in your spinal cord” is normal, and not a cause of symptoms - unless he’s saying it’s an unusual collection of fluid, that normally shouldn’t be there.
I do not know what NOM is, but am guessing you might mean NMO (neuromyelitis optica) - which is an MS-like disease, but does have a blood test (unlike MS).
I do not know what other tests the MS people would do. There is no definite yes or no test for MS, but lumbar puncture and MRI results are usually regarded as key evidence - and you’ve already had those - apparently not pointing to MS.
Although there is no blood test for MS, it is usual to have a lot more blood tests than just for NMO, to rule out other conditions that do show in the blood, ranging from simple vitamin deficiencies to infectious diseases. So you might get a lot more blood tests done (it’s OK, they don’t usually take a separate sample for each one - they just take enough at one time to test for all of them).
They also sometimes do a visual evoked potential test (VEP), which is completely non invasive, and involves sitting in a darkened room with electrodes on your head (just sticky, not implanted), and watching a moving chequerboard pattern for quite some time. They can use this to measure whether signals from your eyes are being retarded at all by damage to your optic nerve - a common but not universal symptom of MS.
Otherwise, I do not know what else they might do that you haven’t already had. It’s possible they might ask for further MRIs, but on different settings - I don’t know.
Thanks Tina, Im sorry I should have said I have had all the other blood tests in March and apart from being low in Magnesium they are all ok. The neurologist said the fluid was also referred to as a ‘lesion’. I guess I’ll wait for the appointment and see what happens then.
A lesion in your spinal cord would certainly cause problems, and makes a lot more sense than: “There’s fluid in your spinal cord” (which there should be).
I’m not sure whether it’s common for lesions to be fluid-filled, though. I don’t really know. I’ve always just thought of them as “patches of inflammation” Thinking about it, you (or your neuro) are probably right about fluid in them, but it’s so unusual to hear it talked about that way.
Usually, they just say: “You have a lesion”, or: “You have inflammation”, and don’t talk (rather confusingly, in my opinion), about fluid!
I have a lesion on my spinal cord too and clear LP and blood tests. These tests were first done in 2011/2012 and I am still no close to a clear diagnosis. I have repeated MRIs done and as they have not changed I still have no diagnosis. I asked about NMO but was told as my vision and evoked potential tests was fine that ruled that out. I may have had the blood test - who knows I have had loads and they have all been fine. One neuro “thinks” it could be degeneration due to the fact that I had radiation treatment for cancer in 1990 in the neck area. A second neuro says that is impossible.
I am trying to accept I may never know what the problem is !
Thanks Moyna its confusing isnt it? I know I have degeneration in my spine but no-one has mentioned the inflammation being that. I have also had optic neuritis 8 years ago. I dont mind the not knowing i guess but i just want something that makes the pins and needles go away and to be able to book a race or walking holiday knowing I will be fine and not suffering with spasms or feel so tired and achy i cant join in and feel Ive wasted my money!
Hope you get some answers too Moyna xx