Hi there, I hope you're all doing well today.
I'm new here & I must say, all your posts are helpful & informative & there's a wonderful sense of community, mutual support & kindness. I'm glad I found you; thanks for being here!
I'd like to introduce myself & to ask if anyone has experienced similar to me? I've been told I have functional symptoms, & would really appreciate any advice on how to cope...
My journey began in summer 2015 when I had what I initially thought was excruciating dental pain. I'd had a tooth removed (lower left jaw) & an implant put in, & thought the pain was related to that procedure. However, my dentist couldn't find anything awry. Additionally, the left side of my face dropped & I was drooling. The jaw pain was unbearable. Cue brain MRIs, painkillers, blood tests, off to neurology, etc. I was told Bell's palsy & trigeminal neuralgia. The pain thankfully cleared after a short course of amitriptyline. I was still fatigued, but thought that would pass. I went back to work.
Since then, I've had to go to a neurology clinic every 6 months. To be honest, I thought I'd recovered after that 1st episode. I thought being seen again was just a precaution, & I'd soon be discharged. But, no...
Although my face pain subsided, it still gets sore. My left eyelid twitches. And new, weird, left-sided symptoms have emerged: painful arm, tingling, heavy feeling in leg, numbness, weakness. The fatigue never cleared, & has, in fact, got progressively worse. More MRIs. All normal. Neuro suggested & tested for Lyme (Negative). Very confusing & worrying.
I've tried to get on with life regardless, working etc. It's been hard, as I've got more fatigued, but I've not wanted to accept anything's really wrong. This March I was forced to face it, though, as I had an episode of severe left-sided symptoms & ended up in A&E where they kept me in a week & checked for stroke, etc. CT & MRI were clear; they said it could be hemiplegic migraine. The on-duty neuro said I should discuss lumbar puncture with my own neuro (why? I wasn't told..)
I saw my own neuro last month & he suggested my symptoms are 'functional' & showed me Jon Stone's website. He'll see me again in 6 months, & suggests in the meantime my GP co-ordinates physio, & other symptom relief as needed. But that's it...It's basically a "wait & see" approach, it seems.
The extreme symptoms have gradually cleared, but I'm left with debilitating ongoing fatigue, arm pain, leg tingling, weakness, numbness; also on & off blurred vision, sore throat, neck, & face. All on my left side. My GP is good but hasn't heard of FND. I feel left alone with the website. I'm wondering, what now? Will having physio prevent further episodes? Will it help me get fully well??
Apologies this is so long. It's helpful to write it all out though, & maybe it resonates with others? Has anyone experienced similar? Or have any tips? I'd be interested & grateful to hear...
Thank you for reading.