I’ve been having a bit of a horrendous time lately and everything has begun feeling like it is falling apart! I started to feel unwell in November and it reached a point where I was struggling to see, eat, talk, walk, think etc. I have had symptoms from top to toe, they initially thought my double vision struggles were a squint but the rest of my symptoms did not match up to that. I also have nystagmus which was not usual for a squint.
I had an MRI in January which showed de-myelination. I began to deteriorate and had 10 days in hospital at the end of Jan. In hospital they ran a series of other tests and gave me IV steroids for 3 days. Which caused a nightmare for my type 1 diabetes!!
It has been 2 weeks since the steroids and some of my symptoms have improved, I still have double vision and am using prisms in my glasses at the moment. I feel very off balance still and have to walk incredibly slowly to make sure I don’t fall. I am very fatigued and achy most of the time – this is far from ideal and I have had to stop all the things I was doing in my life.
The consultant is not 100% sure but does think I may have MS. Before he gives a diagnosis we are awaiting the lumbar puncture to come back and I have a neurology app for early in March. It has been a waiting game and am really struggling with life right now. I just do not feel in a good place physically or psychologically. Everything is uncertain at the moment including my job and educational course.
I wonder if anyone knew how long the steroids usually take to ‘work’, I have read that they reduce inflammation which allows your brain to heal. Not sure if that is correct. I do feel better 2 weeks on from the steroids but I am still not able to return to the things I was doing in my life. I wonder if I perhaps need more steroids or just need to give it more time? Does anyone have any ideas or experience?
Many thanks for any replies,