MS/not MS?

Hi all, hope everyone as well as possible. Over the past 3 1/2yrs I have gone from; myelitis to, poss ms to, probable ms,to the neuro’s2nd in command telling me it can’t be anything other than ms. Have had evoked potentials that say results are "consistent with a demylenating disease, but ms nurse wants me to have more tests before she will see me? I have neuro app again tomorrow, anything I can do/say to help the app go smoothly? I had a lesion at c5/6 diagnosed 3yrs ago, a couple of separate ‘episodes’ since but nothing showing on MRI, although he only did brain and cervical when the problem was with my left leg? Tired and confused, and blooming hot!, Best wishes to all Sue x

Hi Sue,

It’s unusual, but not impossible to be referred to an MS nurse without diagnosis, but I’ve never heard of the nurse being responsible for diagnostic tests before. What tests does she want you to have?

Assuming you don’t get diagnosed tomorrow, I would think it’s reasonable to ask what the remaining doubt is, and whether there’s any other condition they’re still considering. Also whether you could or should be seeing the MS nurse by now.



Thank you for your reply Tina, I have no idea what test the nurse wants me to have. To be fair, I know ms isn’t the easiest illness to dx, but after nearly 4 yrs I swing from being quite blasé - on good days, to being really sad. And surely 2 gp’s and the other neurologist wouldn’t say it is without being fairly confident? - roll on 11.45! I hope you have a good day, Best wishes, Sue