Complicated Grief of Going Undiagnosed for Years
I only just noticed that my neurologist has clinical notes uploaded to my file online, so I read through them today -- in the notes it mentions another neurologist I saw *10yrs* earlier for nerve pain/loss of sensation in my legs. At the time, they just did an EMG that came back unremarkable and no additional tests were recommended. That neurologist said it was most likely meralgia paresthetica so I just moved forward thinking it was that. (*I could go on a rant about how I think meralgia paresthetica was decided based on my body size but I'll hold that one in for now🙃)
Fast forward to 10yrs later to find out I have MS and it could likely have been MS the entire time (EMGs often come back unremarkable for MS, I've since learned).
I'm just feeling...sad? angry? validated? All the complex layers of grief.
I often see younger people sharing in this group that they were diagnosed in their 20s/30s (and some even earlier) and now I realize even more clearly that that could've been me as well. I'm SO sorry anyone is having to deal with this diagnosis, but I'm so so glad for those who were able to catch it early. I can't let myself fall too far down the rabbit hole of wondering what it would've been like to have this diagnosis 10yrs earlier, but there is a part of me that grieves going all this time undiagnosed.
Just wanted to share these musings with people who I know will get it🧡
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ETA: Thank you ALL so much for your posts and commiserating with me; it means a lot. I'm sorry we're all dealing with MS, but so glad to be in good company with you all.