I don’t post that much but after yesterday I kinda hoping I might get a decent response from fellow MS sufferers. I was diagnosed around a year ago, at that time I was till relatively mobile and could run around a play football with my boys albeit not for a massive period maybe 30 mins or so.
They diagnosed me with RRMS, which is fair enough. However, a year on I am struggling terribly with mobility, I have to use crutches to move anywhere on my on own(in work or at home) but if I go out I am in a wheelchair. I struggle with continence stuff and pretty much anything waist down does not work as it should.
The kicker for me is that I have had no illness since this even began no other symptoms anywhere else in my body other than a month of Optic Neuritis when they found out a had MS. So I am really struggling to believe I have RRMS. I have been on a downward spiral since this started and in my mind this time next year I wont be walking at all?
Following meetings with my MS nurse she agrees i seem to be worse than I should be so she arranges the neuro to have a look. I go to see him yesterday and I get the usual 5 minutes of his time, i lift my legs for him and he say they strong. bearing in mind I have done no walking up to that point so I havent gone the usual jelly yet. My MRI shows no other changes in my brain so he just puts it down to me needing physio.
I do not understand how I can still be classed as RRMS yet I have had no relapses but yet I am just getting worse. My GP suggest it sounds more like I may have progressive and i think my nurse thinks that otherwise she would not of sent me back to him. The neuro infuriates me because you can tell he wants you out before you have even sat down so I am really confused and dont know how to go about it.
Sorry for the winge but was hoping some of you may have had similar stories and what you did to ease your thinking?
Any help appreciated