I was just scanned last month and once again more lesions were found and one was enhancing. I don’t get super worked up over lesions or enhancement because I feel like there is plenty of evidence to suggest that 1) RRMS doesn’t mean disease activity stops when we aren’t in relapse; and 2) MRI’s do not offer any real prediction or correlation to a person’s clinical picture. case in point: me.
I have at least 18 lesions in my brain and 6 in my spinal cord. to look at me you would never know it. my EDSS is 1.5-2 and is all sensory related.Even still, it was quite clear that I was not getting any real benefit from the copaxone, partly because it was incredibly difficult for me to stay compliant.
After lots of research, talking with my neuro, whining, and excuse-making, I opted for Tecfidera and last night was my first dose.
i was so not prepared.
how come they never mentioned that i would first be awakened feeling as though my skin was burning off from the inside out, and that later, after worrying that something was seriously wrong and contemplating getting out of bed to check my skin for burns this feeling would subside. I would think the worst had passed and try to get some sleep. except for some reason my legs felt like they were being poked in random places with a pine needle. the itching, the horrible, ungodly, make-your-legs-involuntarily-twitch itching. i was so woefully unprepared for that at 3 am.
after benadryl and a near-sleepless night i have now just swallowed my second dose of Tecfidera. along with more benadryl preemptively. really hoping that is the key for control the itching. also, i would like to point out to any pharmacists and docs out there reading that feeling like my skin is searing off is not what i would describe as “flushing.” flushing sounds cute, like a normal reaction. this was not cute. feeling like your arms are about to turn into pork rinds as you lay there trying to sleep is not cute. it hurts, and burns, and worries the ever-loving shit out of you. just FYI…mmk? :)
anywho, here’s to better control of MS.