My MS story
My symptoms started in December 2019, when my left hand wasn’t doing what I wanted it to do, fast forward to now after 8 MRI scans, 2 lumber punctures, 2 VER and 1 EMG. Also two weeks in hospital with numerous neurologist assessing me. I was diagnosed in February 2022 with relapsing remitting MS, a diagnosis of default given they have ruled everything else out. My scans and spinal fluid are clear. However, I present with terrible balance left hand side doesn’t work well so struggle with most daily tasks. Despite the unclear diagnosis I have been taking Kesimpta from May. I have fared well with this medication and have only had one cold which lasted around seven weeks as I couldn’t quite kick it. The MS help around my area is non-existent and I feel like I have been left to fester the last few years. I generally do not believe that I would have any clarity without my private healthcare. Does anyone else have the neurologist at Salford Royal?
@Chezza1 I'm also under Salford Royal and have a similar story to you. My symptoms began in 2019 and I've had 3 MRI scans of my brain and c spine and a LP. First scan was abnormal and several lesions found in brain and spinal column. I was allocated an MS nurse immediately and diagnosed with probable MS. 2 further annual MRI scans showed no new lesions and LP clear so I'm no further forward with my diagnosis. I meet criteria with dissemination in space but not time. My neurologist has said it can't be anything else and has suggested I've had MS for many years and my MS has burnt out as I'm 59 ! My symptoms have not gone away but I've not had any acute relapses and I'm not on any DMTs. I wonder if I will ever be formally diagnosed. I had another fall this week and I'm currently looking lovely with a horrible black eye ! Have you had a full spinal MRI ? Mine have just been of my neck . Seeing Gp tomorrow and hoping I can get a full spinal MRI as I'm having problems with my back and right leg. Neurologist doesn't think it's MS related. I also had to go private for my first MRI as I wasn't taken seriously at first and it was suggested I had depression and anxiety!
I was initially told it was stress related too, however because I have clonus in my left foot it’s def neurological apparently. 2 of the MRIs have been spine included and all tests clear as well as my spinal fluid being clear on both occasions. It’s just bonkers, I don’t really believe I have MS I just think they can’t figure it out. I’m taking kesimpta just in case and promised to stop it if I got poorly.