A challenge in early MS is that a common disease course will include a minor, inconvenient symptom arising, then eventually subsiding and then complete radio silence for a long time. Frequently 7 years. It feels like a lightning-in-a-bottle kind of thing- if you manage to get the right doctor at precisely the right time, maybe you can catch it at that initial presentation. Accurate early diagnosis is still a challenge, and there is no shortage of stories detailing frustrations about misdiagnosis and such challenges. I’ve talked a little bit about my early symptoms, but here is what happened:
Hindsight, as they say, is 20/20. Headspace matters a lot as well. Me today might well have handled the situation completely differently. Anyway. It was 2004. I was in the relatively early days of my long-term job as a school photographer, living in NW Arkansas at the time. Relevant back story is that, for some reason, I had through my younger days frequently poked myself with moderately sharp objects. Not to do any damage, but to feel the poke. We’re not talking Bowie knives or Xacto knives or anything like that, even. A sharp pencil or the end of a paper clip was sufficient. I can’t explain it. Don’t ask 😆
So it must have been late spring. I know this because we were allowed to wear shorts for outdoor shoots. I must have had a small break and as I was waiting and fidgeting I ended poking my leg with a paper clip. There was no sensation. I watched myself performing the action. My hand would take the paper clip and poke my left leg. Nothing. No feeling at all. If I closed my eyes, I would not have known there was contact being made at all. So I did the reasonable thing. I kept poking sporadically with various pointy objects to see if there were any changes. There weren’t. On the “reasonable” track, I sought medical care. Haha I didn’t. I surveyed my co-workers and said “here is this weird thing that is happening, have you ever had this happen or have you heard of it happening?” Of course no one had. So I just let it be a thing “if I don’t have complete feeling in my left leg, it won’t bother me that much.” Eventually (maybe about a week), the symptom subsided, feeling returned, and I ignored that it ever happened. And things went back to normal. For years.
Fast forward to 2011. 7 years from the (now I know to be) first expression of my disease. This was the beginning of my drop foot. Particularly at work, but at many times, I could not lift my toe off of the ground very well, so I shuffled and stumbled a lot. Initially treatment was sought through a chiropractor (a discipline that I did not necessarily endorse at the time) with the thought that maybe it was related to a knee or ankle complaint. After several areas of focus, the chiropractor came to me and said “I don’t think this is chiropractic… I think you should go and see my neurologist” and she left it at that. Of course I had no idea what the reasoning to see a neurologist might be, so I considered not doing it at all. Thank goodness this second symptom was bothersome enough that I went in the hope that it would somehow clear up the stumbling. Who knows where would be today if I hadn’t.
The rest, as they say in the movies, is history. I was slow to accept that I needed to follow through on care or even believe that I was worth caring for, but that’s a whole different battle. So… please. Even if your symptom is “just a minor inconvenience”, go have someone take a look. If it is something nefarious, in this time and place, there are treatment options that can minimize or halt your deterioration. Believe me, you’re worth it.
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