I have always, and will always, say, that I would never, ever want someone to physically know what it is like to have any illness or pain. However, I've recently started to wonder if there are benefits to knowing if anyone else has this diagnosis.
I've had T1 for, goodness, 19ish years, and several years ago I started having pains in my stomach. I've had scopes in places I'd rather not rethink, scans, xrays, dietary changes, spinal injections, even Botox injections in my tummy, you name it. No diagnosis.
This past fall, however, I had the opportunity to go to UAB (Univ of Alabama, Birmingham). After the usual what are you taking, what procedures have you had done, what works, what doesn't, etc, the doctor asked me why I was sitting in the position I was.
To be honest, I didn't even know what he was referring to, however, at that moment I realized that I had been sitting in his straight back chair more like as if I were in a recliner. He asked if that was a common, comfortable way for me to sit. I hadn't really noticed before, but he was correct. That is, and has been for years, the way I sit most comfortably.
Right then, he started writing things in my chart, and told me to find a pain clinic and try Lyrica. Once I got my pen and paper, I was almost overjoyed to have a DIAGNOSIS to write down!
I've found support groups and forums for many different types of neuropathy, but never any on my specific ailment.
Again, I would never want anyone to go through this, but if there is someone who has been diagnosed with what I have, maybe, just maybe I can find, oh, maybe a common ground with someone. To discuss what works for them, what doesn't, what hurts more, hurts less, what meds have and/or haven't, etc.
Any suggestions? Thanks for making it this far in my babbling!