For my wheelchair evaluation, I’m going out…my wheelchair evaluation my neurologist needed to submit a letter of need. Due to the coronavirus, we did this via teleconference the second week of April. He’s been my neurologist for 22 years. He has files upon files upon files on May. We laugh, actually, at how many times my files have been thinned and moved to storage. My file still always remain as thick as medical encyclopedia. I explain this so you know that he has every document on me regardless if he sees me face-to-face or via teleconference. Thursday I received his letter￼. I scanned it to the wheelchair occupational therapist Friday. I didn’t think anything of it but I always say the letters or notes from the doctors just in case I need it for something else.
My little marshmallow is taking so long to eat this morning I picked up the letter and started reading it￼￼. It wasn’t anything unexpected. I follow my health records pretty well. I knew what the letter would say. Nothing untrue and nothing I didn’t know. Yet there was one line that I never actually saw written about me, even though I have always known.
Impression: Secondary progressive Multiple Sclerosis with neurological deficits as noted.
I just never saw the Secondary Progressive diagnosis in a letter or note. Usually it just says multiple sclerosis or even relapse remitting multiple sclerosis, which I always assumed was for insurance reasons. I’ve known I get worse without a relapse, which is the main characteristic of SPMS. I’ve even told people I am mostly SPMS but it was different to see it. I don’t know why. Doesn’t change anything. It felt like I got diagnosed again in that moment when I read that line.
Sounds a little silly. It was enough to make me write a whole blog about it though. Such a little line and it actually made a bit of an impact. It’s amazing how you can know something for so long and then you see it in writing and it’s completely different.￼ It won’t make a difference one way or the other. Plus what’s so ridiculous is I know that I’m secondary progressive. Such a silly thing to throw me so off. ￼￼