I am reaching out here because I want to see if anyone’s had similar experiences.I was misdiagnosed 6 years ago with peripheral neuropathy. And before that pretty much told that I was crazy and should stop wearing tight pants. It started out with a burning sensation in my spine and in my right leg I felt super tired and sleepy all the time and my legs seem to give out on me out of nowhere. Then I was diagnosed with fibromyalgia. Medications that I’ve tried for it haven’t helped.now I find that my symptoms keep changing. For a while now I’ve been waking up with trilogy numbness my foot in my arms from my elbow joint down feel numb it’s almost like they’re paralyzed. The other day I woke up and the last three toes on my foot we’re completely numb they’ve stayed numb now I woke up today and the last three fingers on my hands are completely numb. I feel like I’m losing function of my body. I often find myself confused like the room is spinning and I just can’t gather my thoughts. I get burning sensations up and down my spine in my right leg my left me wants to give out on me all the time randomly. I did have a CT scan done of my brain it came back clean they did some general blood work that came back fine. I feel like I’m going crazy. When I tell my GP about the foot and hand going numb she tells me that I need to see a neurologist and that it’s not typical of fibromyalgia.I do plan on making an appointment or finding some sort of specialized neurologist ASAP. I’m curious what it was like for you before you are diagnosed did you go through any of this?how did you find the right doctors.? I’ve reached out to forums and my fibromyalgia groups with no luck. I’ve had this feeling like it’s something more than fibromyalgia. Any help in May direction I’d really appreciate. as well I do currently have an internist, I see. I was getting pt for the tenderness I felt in my lower back and upper neck area to try and help with walking. like I said any help in any direction I would greatly appreciate any stories of how you got diagnosed or if you have anything similar going on I would also really appreciate. Thank you so much for your time, I know this was long and probably all over the place. Its hard for me to concentrate, and as of right now with my hand being numb I have to use voice automated programs to be able to type so I apologize if there is anything in here that doesn’t sound correct.
whereabouts are you?
uk or not?
i go to salford royal and they are great.
would your gp help with finding a good neuro?
would love to help but my brain is befuddled!
Hi,I was diagnosed with Functional Neurological Disorder after my first neuro found nothing on MRI (clear blood tests and ENT specialist found naught). I’m still in limboland though after the second neurologist refused to put any label on it but is sending me for a VEP test.
I’m currently being treated through a group CFS/ME therapy course (at the first neuro’s suggestion a year ago!)
I’m surprised that your GP hasn’t just made you an appointment to see a neurologist! Unless you’re going private (which I know nothing about). My GP just arranged it for me. I have patches of burning/scalded sensation/numbness - not as extreme as yours by the sound of it though. My typing is clumsy and I’m good at dropping things but my hands still serve me.
Do see a neurologist but don’t expect answers immediately.Good luck!