I am 48 and ‘probable MS’ now but that dx was made by my neuro who is not an MS specialist. He is happy to refer me to an MS specialist, but I want to make sure it is the right one.
I currently have Transverse Myelitis C2C3 (since at least April), a few non typical brain lesions and positive O bands. My entire body is affected by the TM, face, torso, legs and arms. I can walk short distances. I have not been able to return to work. I have recently started experiencing a sort of swaying wobbliness whihc could be balance issues and therefore indicative of brainstem involvement.
Current neuro has not booked me in for follow up MRI and has said he will not support me even if I want one privately as he thinks I will worry over every little lesion and he says lesions aren’t indicative anyway, symptoms are. Which I understand, but my sister died at 44 of MS just 10 years after her initial dx. if it is at all possible I am RR or CIS and not progressive, then I want that dx now and I want treatment before it becomes progressive. If it is already progressive, then at least I can use my energy for living rather than worrying about not getting treatment that might help. I want that follow up MRI.
I’m pretty desperate, here folks. Time is not on my side. My MS nurse referral has been made, but no appt yet.
So, I would like to find an MS specialist neuro in the West Mids area ideally with experience of TM (my meds aren’t working) who believes in early treatment. If you know of a good one, could you message me please?
I hope this is OK, I couldn’t see anything in the rules saying it wasn’t, but obviously please flag/report if not.