Those of you familiar with the process know how frustrating it can be. MRI after MRI, lumbar punctures, new symptoms, no sign of a second lesion in the brain stem. Yet for all intents and purposes you are living with MS. In my case it’s CIS – a condition that is a precursor for full blown MS where the sufferer has MS symptoms. I have all the specialists seeing me, plans in place, connections made, adapted housing, the works, I just don’t have that dx and might not get it for five years.
I can live with this because I understand the nature of this autoimmune disease. I was lucky enough to study neuroscience at a fantastic university (UoL). As fate would have it the very hospital I was applying for a phd at in neuroscience is now where I am a patient. My last MRI was in May and my next appointment with my neurologist is at the end of this month. I know what she is going to say. I know the lesions for my last “relapse” might not appear yet, it’s just how it is. An MRI does not show brand new lesions and she told me in April that my Trigeminal Neuralgia would not show on the MRI she booked for me – it might never show up.
Some people call MS the “invisible” or “painless” disease. I’d like them to walk a minute in my shoes and then tell me that.