I am so happy for you, not that you have this thing, but that your perseverance paid off to where you got a diagnosis and have new hope or choices that may help you! It’s the type of Cinderella story I’ve been hoping for after 6 years, my wish to make the word “Idiopathic “ go away so as to have a clearer roadmap on how to live optimally with this thing.
I have been coming to terms with living without a diagnosis, now your story has me wondering. My first Neurologist, at my mysterious PN onset, wanted to order an MRI but couldn’t because of metal wires in my heart. 18 months ago when my time came for the heart device replacement, I had them replace my 18 year old metal wires with newer MRI friendly ones for the sole benefit of having MRI’s available to me as a diagnostic option whenever needed for health. But I had moved to a different state, and my new Neurologist said MRI wasn’t necessary. I had endured 3 years of incompatibility with him, so I switched to a recommended practice partner of his who also doesn’t believe that an MRI would add value. I’ve almost begged for an MRI, and realize in the back of my head, as much as I like the new Neurologist that I’ve seen only once now, he’s unlikely to “start from scratch” versus just building on his partner’s previous work and decisions. So I’ve almost given up hope that I’ll ever get an MRI to complete or put closure on the diagnostic journey I’d hoped for. (I may be moving to a different state in 2 months, if so, maybe a new Neurologist that I’d be forced to find may have different thoughts) in the meantime I’m trying to be positive about making the best of being idiopathic and learning good things from this group on managing and beating the symptoms!
Didn’t mean to detract from your happiness with my relapse into self-pity. I am ecstatic for you, and the new hope available for you! More than anything, I’m thankful for you sharing your journey and knowledge with all of us on here. I can’t wait to hear how you proceed and succeed with this new knowledge - please keep us posted! Deb