Over 2 months ago i was in hospital for a week with numb legs up to waist, weakness and optical neuritis. Had 3 days of iv steroids. Had mri showing lesions to brain neck and spine, and o bands in csf. Was given diagnosis os CIS, since seen ms nurse and awaiting follow up mri in sept. Had phonecall from neuro dr insisting i go to brain center to get urgent bloods done as some during hospital were not processed! I asked which ones and she said the antibodies that can rule in/out neuromyelitis optica. Now looking briefly into this the symptoms are very similar but aside from steroids the treatment pathway is different and it seems treatment isnt delayed or watch and wait…like i am now. Has anyone been in this situation? Im continuing to stay positive as ive 4 young children. Feel disappointed that a crucial test was missed after i was told all blood results were back. I guess mistakes happen. Anyone out there have nmo? Thanks.
hi flower
sorry that you are having this set back.
you will just have to continue with the waiting game.
you are right to feel disappointed with the test results having not been seen.
you could contact PALS (Patient Advice and Liaison Service) at your hospital.
meanwhile enjoy your children, cuddles are the best therapy!
good luck
carole x