Thursdays and Fridays around here are always a flurry of internet activity and doctor phone calls so that I don't have to spend the weekend in pain and all depressed that I have nothing ahead of me and no options in terms of relief. So I've got my phone turned up and I'm waiting for several doctors to call me back.
I'm realizing a diagnosis is not looking like it's going to happen where I live. Doctors are too overwhelmed by the sheer number of tests and doctors I've seen and lack of diagnosis - they just don't want to take it on if it hasn't already been figured out. So I need a team approach or a better specialist. Which means: (1) go back to a diagnostic center or (2) pursue what I think could be my diagnosis - pudendal neuralgia a.k.a. pudendal nerve entrapment (PNE). I'm waiting to talk to doctors at 2 locations in the US to see if they are willing to evaluate me in person. I met a woman a few months back that had the same pain, in the same location as me -- which is not textbook PNE -- and it took her something like 7 yrs to get a diagnosis simply because doctors were unwilling to consider someone for PNE that wasn't textbook. You're not a cyclist? Then no PNE for you. It's not a diagnosis I want but at least it would be an answer. So I'm hopeful that one of those doctors will evaluate me in person. Even if it's a dead end at least it can be crossed off the list. I'm tired of sitting in my apartment staring out the dirty windows (that are getting cleaned today!) and waiting for something to miraculously happen.
I'm also going to try to get an MRN (MR Neurography). Like an MRI but of the nerves is my understanding and only done in 3 locations. If I can convince the Neurologist on Monday that this is something he might as well just humor me with, and write the scrip, then perhaps it will add some value. If not, no harm done (it involves no radiation).
Last night I was in the fetal position crying in pain and tonight Husband and I are having dinner at one of the best restaurants in the city with friends for a birthday. Let's just hope I can hold it together.
Wow, you are really going through it. I hope you eventually find a good specialist who will do the right investigations and consider all the possibilities. Perhaps looking farther a field would help... I hope the birthday dinner went okay and you're weekend passes without incident. Thinking of you.
ReplyDeletel.upron has done a number on my emotions as well. at first i was dead tired, but now i'm all depressed and weepy. i get teary eyed at the smallest things! i got my period (my doc says it's the last one for a while, woohoo!) and i had no pain whatsoever. i couldn't believe it.
ReplyDeletei hope that you get a diagnosis soon. i hate having to chase after doctors!