MS diagnosis w/brain lesions but negative spinal tap
Has anyone been diagnosed with MS after a negative lumbar puncture but had brain lesions
That's a really good question,
, and I don't have a clear answer for you. Did you get the lumbar puncture before or after your MRI? I only ask because sometimes doctors will order a lumbar puncture after an MRI where the results are unclear. So, a patient may have no lesions or only one lesion or only lesions in one part of the central nervous system. In those cases, a doctor will use the results of the lumbar puncture to confirm or rule out an MS diagnosis.
If you are in this situation, may I ask what your doctors have diagnosed you with, if not MS?
Also, I thought you might find this conversation from our forums interesting, as it talks about having only brain lesions -- https://multiplesclerosis.net/forums/is-it-possible-to-have-ms-with-only-brain-lesions. I hope this information helps!
Best, Erin, MultipleSclerosis.net Team Member.
I am in the same boat. I have multiple MS symptoms. They did find brain lesions on my MRIs, but apparently no spinal lesions. Lumbar puncture was done after brain MRI and was negative. My understanding is a small percentage of people with MS have no oligoclonal bands in their CSF. How do you find out if you are in that group?
yes, we're cheering you on with your "squeaky wheel" moves! We certainly hope that you're able to track them down and that they arrive there next week. Keep us posted.
Best
Alene, moderator
Nice! Hope the follow up brings the good news that the images were received! 😀
Yes, have had ms symptoms since 1978, neurologist diagnosed me in 1982 as clinical MS since spinal taps were negative. MRI in 1986 confirmed with lesions in brain and spinal cord. Attended an MS center for treatment, that neuro confirmed also, spinal tap negative. Last time I saw a neuro at an ms center, he said no because the LSP was negative. That was in 2020, first set of MRIs showed lesions, 2nd set a year later was question of lesions. So official diagnosis no longer MS, now called: Brain Demyelination of Central Nervous System. Which, when other medical practitioners hear all say "THAT'S MS". I gave up on a diagnosis. At 68, now hit with ageing diseases and erosive osteoarthritis, obesity borderline, too many to list.
oh my goodness! That had to be incredibly frustrating to experience so much inconsistency in your diagnosis. None of us want to be diagnosed with MS but there is validation and answers that come with a diagnosis. So to have gone back and forth so much had to be challenging - physically, mentally and emotionally. It sounds like you have a good perspective on it now. Diagnosis aside, how are you doing with managing any symptoms that you experience? Have you been able to find ways to manage them outside of having a formal diagnosis?
Best
Alene, Moderator
, I am so glad you shared this picture! Is this a recent photo? I know you have endured a lot over the years, and I hope things are going a bit better for you, despite the challenges of aging and MS (or whatever your doctor wants to call it).
Best, Erin, MultipleSclerosis.net Team Member.
