This is the first time I’m talking about this so hope I make sense. I just came on here hoping to get some perspective, as I have not really known who to talk to since a consultant diagnosed me 2 weeks ago.
I was referred to an MS specialist after roughly a year of symptoms and 2 MRIs showing multiple lesions. In the appointment, the consultant told me that the timeline of my symptoms indicated that the MS is quite active and he therefore recommends starting treatment as soon as possible. He talked me though several different drugs and told me I would be contacted by an MS nurse. He also recommended a lumbar puncture and 3rd MRI, in his words to gain further information to help us choose the most appropriate treatment.
Now it’s 2 weeks later and I have received appointments for the lumber puncture and MRI, and a leaflet about drugs from the nurse. I think maybe I was hoping to actually speak to a nurse to get a bit more clarity, and the fact that they’ve just sent a leaflet and booked me in for more tests is making me slightly hopeful that maybe the diagnosis isn’t definitive yet. I don’t know what I was expecting really, but I feel like I’m now in limbo.
I thought people on here might be able to offer some experience to help me understand what’s going on a little better. What are people’s experiences of lumbar punctures? Has anybody refused one and, if so, what were the implications? I don’t generally have a problem with medical procedures but this is one that does make me anxious due to a bad epidural experience in the past.
Sorry if these are questions that have been asked before! I’m just a bit overwhelmed by the whole thing and have seen some really supportive threads on here so thought it was worth reaching out.
Thank you for listening x