Suspected MS but no lesions
TL/DR: Has anyone had their first symptom episode and had no lesions on MRI, but then went on to show lesions later?
In mid April, my left arm went numb and tingly, and got weak and heavy to the point I couldn’t play my instrument (I am a conservatory student). That feeling started last October in my perineum, then went away, then came back and spread to my arm, leg, and face in April. I was admitted to the hospital, and the first neurologist who saw my almost diagnosed me without an MRI, and ordered one “just to confirm”. The full body MRI came back normal, and I was discharged the next day and was referred to a neurologist who told me that since my MRI was normal, the symptoms must be psycho-somatic, or just in my head.
I KNOW these are real symptoms. My arm went back to mostly normal (still have occasional bouts of neuropathy/tingling), but my left leg has slowly been getting weaker and has been having stability issues, my legs feel heavy like they’re encased in concrete after walking for more than 15 minutes, my crotch/face are still tingling, and I’m still having urinary incontinence and retention, and constiption/diarrhea with every BM. The neurologist I saw told me that if I did have MS, I would be seeing some leg weakness over the next few months, and that’s exactly what’s been happening. I haven’t had an MRI since the first episode, and I’m seeing a new neurologist on Monday. Has anyone here gotten diagnosed with no lesions? Has anyone’s initial MRI showed no lesions, but then went on to have lesions? Has anyone else had similar symptoms?
Advice - Get MRI's From Hospitals 🏥 They Have the Best Technology and Will Show the Lesions with the Better MRI Machines, Or Ask for a Reread of previous ones, your neurologist should have access to them , and Be able to Read Them with You Present
I'm in same boat. There are some anecdotal cases of MRI lesions showing up many years after symptoms start. Sadly the Macdonald criteria are self-fulfilling on this. All you can do is have MRIs once in a while, and wait for lesions to turn up. Deeply frustrating as early start on DMTs believed to have big impact on long-term trajectory. p.s. if you find a source of DMTs (ocrevus) e.g. dark web or something, please let me know.