Another question from a newbie...

Sorry for another question, but I saw another poster’s thread about MS Nurse, and wondered at what point do you get assigned to / have contact with, an MS nurse… Is it only after definite diagnosis? I’ve had MRI and Evoked Potentials tests, which shows some changes going on, but not definitive. Have just had a LP and waiting for results… Various ‘symptoms’ over the past 7 years, which seem to point to MS, but no one (professionals) want to commit themselves to a dx… So just wanted to know if access to an MS nurse is only given after a definite dx? I have so many questions and would like to be able to talk to someone medically qualified about it, but this option has never been offered.

If access to an MS nurse is possible with a CIS diagnosis, then surely access should be possible at your stage? Maybe it depends on your location. I know for e.g. that in my area the MS nurses are madly busy, so it could be that you’d only get access based on a definite MS diagnosis. Perhaps you could try phoning your neurologists secretary and asking?


So 6 weeks after the lumbar puncture, I was expecting a letter just offering me an appointment with Neurologist but instead received letter saying that the LP shows evidence of ongoing inflammation of the central nervous system. So now waiting to see him. Would have expected to have received information like that in person not in a letter, but perhaps he thought as I was half expecting it, it wouldn’t be a shock. He was wrong. It was.