I probably won’t make a lot of sense. I know my way of putting things, with the medical professionals don’t seem to work very well, so I thought I would ask for advice !
Ok, so what’s my issue.
Since my diagnoses nearly a year ago I belive I have had two (minor) relapses. Both these occasions I mentioned it to my ms nurse, but as I really really disliked the affect steroids had on me the first time I saw no point in having much discussion around it.
When I was diagnosed I sort of excepted I would have relapses and excepted that this was a new normal part of my life, just hoping that nothing would happen that meant I was unable to work. (I enjoy it). My ‘event’ that lead to diagnoses I could probably have worked through if it hadn’t been for the after affect of the steroids. (I found the 5 weeks at home really hard to deal with).
The problem I now have is after my last appointment with the neorologist, and communication with my ms nurse they don’t seem to recognise that I have had two relapses. During the appointment he talked of an mri before I saw him next, his letter, two months later seemed to suggest I had not had any relapses. When I contacted my ms nurse and asked when I would get an appointment through for a mri she said that he would deside at my next appointment if I needed one !
when I first saw the neorologist I was having a relaps. My symptoms have not been documented outside of relaps so I truly don’t understand how they can really know what is what. I mistakenly believed they would just ‘believe me’.
it feels like because I am managing to work full time I’m ok. They seem to miss that a lot is down to my level of drive to be at work. I did point out to ms nurse that I only had 3 days off when I fractured my ribs. (X ray didn’t show, so I thought just bruised, gp identified they were fractured).
i really don’t get it, I am confused and don’t know what to do.