Functional Neurological Disorder - FND Hope
2,659 members1,429 posts

Functional Movement Disorder with Concussion/PNES

I just got diagnosed. FMD of 6 years and now PNES from the trauma of having it for this long undiagnosed. I was in an MVA on suffered serious injury. Concussion was the worst. I have fallen and broken my foot and re-concussed 4 times now. I am debilitated, Does anyone else have full body functional movement disorder including leg paralysis with full spine paralysis at times? does it affect your ability to walk, climb stairs and hold pens, cups etc? Has anyone had any treatment success with this? I have a lot of things going on and even the doctors are speechless. All I have had so far is CBT as a recommended treatment. Also physio- but the physio sent me to ER twice now in 6 months from symptoms triggered and partial seizure. So- I am done- I am looking for home remedy or a world renowned treatment specialist. I would love to hear any support or stories/recommendations - very alone here.

2 Replies
oldestnewest

Hi Halva, 3 years ago I had numerous symptoms from sciatica that spread completely over 1 side of my body top to bottom. For over 2 years I’ve struggled with nes, Parkinson’s symptoms, stroke symptoms, constant pain, no sleep, isolation, headache that would drop me on the floor. I’ve had a occipital nerve block injections to my brain that to this day has stopped the headaches. I’ve been lucky that a lot of my symptoms have eased off on their own but have been left with some symptoms that have not eased off and return every time I overdo it and get fatigued. I’ve had multi disaplinanry rehabilitation in London’s queen square for a month inpatient last December this gave me techniques to deal with my symptoms. It’s a struggle every day that every one on here knows to try to improve bit by bit month by month. I was lucky to get diagnosed by professor Edwards after 17 months of miss diagnosed and treated with depression and anxiety which I never had at the start of my FND journey, I do accept I ended up with depression and anxiety but that was from lack of answers from professionals and left in agony wondering what on Earth was wrong with me. Hope this helps you in some way.

Reply

I had limb paralysis. It got better over time. Listening to the book Functional Neurologic Disorders helped me. Your beliefs about your illness may influence your illness. Frazier Rehab in Kentucky, Mayo Clinic in Minnesota, Massachusetts General, Rush Hospital in Chicago, and Stanford in California are FND specialty centers in the USA.

Reply

You may also like...