was hoping for abit of guidance if possible please…
so after 4 months of MRI’s etc, i received a letter from the neuro confirming they found a second lesion on my brain, hence the new symptoms ive been experiencing. first lesion was back in summer 2015. The letter stated that the second lesion ‘despite the neg lumber puncture last year’ suggests the likelyhood of MS, and we will discuss treatment at our next meeting.
my question is 2fold:
1: what else could it be but MS?! considering multiple attacks
- anyone else been told this news via letter then expected to wait til may for next appointment?!
your neuro is being very responsible in writing to you.
you may need to be transferred to an ms specialist neuro.
the procedure is quite strict and there may be other tests to be done.
appointments depend on the neuro’s caseload.
basically you need to wait!
Hi Edd. I’m not a medical person, just know some things as I’ve gone on my journey. Lesions can be caused by all maner of illnesses and aging. As Carole says there is no one test for ms so you have to go through numerous pokes and prodding’s as it were to rule out some diseases. Unfortunately from my own experience and from reading other posts on here it appears to be standard practice to leave patients in limbo for months at a time. I know it’s a horrible time but hang on there. I found this forum really useful as at least people can emphasise with what you are going through, which isn’t necessarily the case with friends and family. I guess everyone is used to going to the doctor and getting the answers quickly,ms just isn’t like that. Take care and hope things work out.
I find it a bit peculiar as well. I think being diagnosed by letter a bit unfeeling, to say the least, and to have your next appointment months away weird. What does your neurologist expect you to do with this information? Just put it out of your mind until May?
Hmmm, in your shoes, I’d be tempted to write back to the neurologist asking the questions that you’ve asked here. Ie, is this an actual MS diagnosis? As the wording seems a bit unclear. Are you going to be given any support or information from an MS nurse? If so, when? And how will that contact me made? Are you going to be offered disease modifying drugs (DMDs)? And if so, when? And how are you supposed to figure out which drugs are available to you?
And if this isn’t an actual diagnosis, given your negative LP, what is supposed to happen next?
And most importantly, are you really expected to wait until May for the next action?
Appreciate everyone’s responses, thank you. I’ve managed to get my appointment moved forward to the beginning of February so don’t need to wait that long! Very difficult to put it out of your mind so it can’t come soon enough! Thanks again, Edd