Those of you in the same limbo know how it feels to have the relapsing and remission that defines MS, to have the symptoms of it, for all your doctors to treat you as if you have it, but to have to wait for that A&E visit or MRI or LP that confirms it.
I have CIS – except it is not “clinically isolated” anymore, but that’s ok. I get all the treatment I need – except the injection – and I am getting help from my government so I can live in a good manner as a disabled person.
However, sometimes I think I’d be better off diagnosed – but perhaps that is mostly down to no one knowing what CIS is! Even the doctors! I was shocked when my Urologist knew what it meant, but then he was working at a private hospital. The junior dentists told me they had googled it after I left consultation over my erupting wisdom teeth. In the end I always say, “It’s CIS, which is a pre-cursor for MS… so I have a high chance of developing it… in the next fives years….” It’s complicated!
I felt sorry for my GP today. We moved recently so changed surgeries and the paperwork that came with me…well, you can imagine! Piles of paperwork for two years of illness! I felt so guilty in keeping so many others in the waiting room waiting, however, I needed to fix my meds and get this new doctor inducted into my case. Her surgery is the hub for all my healthcare, with the GP’s there doing new referrals and liaising with my neurologist, so I am very happy that they are all caught up and in my life. 😀
Whether or not it is MS I am very lucky to live in England. The NHS is wonderful and Liverpool has centres of medical excellence that I directly benefit from. I am in Limbo, but the waiting room is beautiful! Waiting is not so bad when you are looked after by your country, your friends and your family…