I was diagnosed last week with MS. It wasn’t a surprise as I’d suspected it for couple of years after I lost sensation from hip to toes both legs. Initially cauda equina was suspected but it wasn’t and was just told to go back if it happened again. Not long after that my thumb and finger lost sensation and still have. Finally went to my gp about that and the restless leg I’d been having last couple of years. He referred me to neurologist, neurologist said it was carpal tunnel and restless leg was to do with my back. When I mentioned I’d lost sensation from hip to toes previously he requested brain and neck mri. Had that in dec.
Last month I went numb down below and again cauda equina was suspected and sent to a&e. They looked at my mri and asked if anyone had spoken to me. After being transferred to another hospital I was asked again if anyone had spoken to me about my mri, at that point I said I beginning to suspect it’s showing something. The dr then told me I had demylination in the brain and on my neck and they want to get the rest of my back scanned. It wasn’t cauda equina. The new scan has shown lesions further down my back. Last week when I saw the neurologist he muttered I have Ms Followed by I need a lumber puncture then back to him in 3mths to start medication. If I go numb again to contact the local MS nurse.
Now I feel lost! What now? I’ve been given the diagnosis and left to it for a few months. I have so many little health niggles that I’ve been ignoring (too difficult getting dr appts as I work full time and didnt want to called a hyperchondriac yet now wondering if it’s associated with the MS.
Will the neurologist ask the MS nurse to contact me, should I contact her myself?
Work and family have been great but it’s not the same as someone who has extensive knowledge