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Year Long Progression of Neurological Symptoms. Exhausted. Angry.
Brain & Nervous System | Last Active: Aug 24, 2022 | Replies (33)Comment receiving replies
Hello Sherwood06 and welcome to Connect. I wasn't sure what FND "Functional Neurological Disorder" was, so I looked that up and in doing that, I found a couple links that may be of interest. I looked at the FND Hope site and they have a lot about coping and support. It mentions physiotherapy as a way to "reboot" the operating system in the brain. As I read this, it sounds like your symptoms do match the description of FND. The rare diseases site also mentions another support site and places to look for information about clinical trials. I can imagine how frustrating and upsetting this must be. My first thoughts were about spine issues since I am a spine surgery patient. I did have cervical stenosis and had surgery to free my spinal cord. Spine issues could change in time since the neck surgery that you had, and it does sound like your doctors may haveconsidered those possibilities.
https://rarediseases.org/rare-diseases/fnd/
https://fndhope.org/
Did your doctors at MGH suggest any therapies for FND?
Replies to "Hello Sherwood06 and welcome to Connect. I wasn't sure what FND "Functional Neurological Disorder" was, so..."
You had surgery to free your spinal cord which sounds like the surgery they want to do to me as a last resort. They called the surgery a Laminectomy or Decompression. The surgeon said sometimes by cleaning up the spinal cord area, will take away the numbness that I have. Since then, I have developed incredible nerve pain in my right foot, ankle and achilles area.
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Thanks for your reply and concern. I had been aware of FND prior to my diagnosis and on many levels, it did sound like the closest "explanation" for the vastness of my symptoms. So yes, during the past 6-8 months I have posted many times on FND Hope and I've read quite a bit on neurosymptoms.org. These are the 2 most reputable sites relative to FND.
I had a c6 c7 fusion to alleviate spinal cord compression (on imaging) which they thought was casuing my symptoms. In hindsight, I'm not sure it was. I've learned that it isn't rare for people to have spinal surgeries, only to find out their neuro issues aren't due to structural issues. Sad.
And regarding physiotherapy, I am / was a high level athlete (hockey) who still stays very active/strong(..as much as I can with what I've been through). I dont say this in a snarky manner, but I think it's safe to say that my own routines would trump any sort of physiotherapy I would be prescribed. My Dr's have echoed that sentiment so they have directed me more towards the psychiatry/psychology routes. As mentioned, I have my own spiritual/meditative practice which I have leaned on, but from a physical symptom standpoint, to not much avail.