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Functional Neurological disorder next steps
Brain & Nervous System | Last Active: Jun 26 10:35am | Replies (21)Comment receiving replies
I was diagnosed with FND January 2024 at Mayo Rochester. I previously was misdiagnosed with Myasthenia Gravis, I started down this path years ago; in hindsight, I'd say my earliest signs of something wrong go back as far as 2014. Reading your posts, I am struck by how familiar yet different your experiences are from mine, if you know what I mean. Since my diagnosis, I've participated in the BeST Program at Mayo, and it was very beneficial. More than anything, it gave me some hope and restored some confidence. The loss of confidence was the hardest aspect of this condition to cope with. That and anxiety. The physical side had started to get quite bizarre around mid 2023; I developed very odd gait abnormalities. It was the bizarre gait that finally drove me to Mayo, so it turned out to be a positive. The BeST Program has helped me learn to manage this and other challenges, and I have started working out at a gym, which has also been very beneficial. I am on no prescription meds for this, although I take CBD gelcaps to help with anxiety. I should be getting counselling as well, but there simply are not enough mental health providers to cover the demand where I live (US Midwest). So I am doing what I can with the resources available to me, which has improved matters, but it is an ongoing job to manage this.
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Hi Eric @westoneorama, @rattlesnake and others in a similar boat -
As I sit here about to join a zoom meeting with my Mayo Pain Rehab Center support group and basically reread our PRC blueprint of a manual together (today's chapter is self-esteem), I recognize that living with chronic conditions means a lifetime of commitment and ongoing self-work. Understanding what and how to best manage is the first step, but application is the real chore.
The 4 pillars sum up the areas that will be ongoing challenges with many subdivisions within:
Physical
Emotional
Behavioral
Chemical
Like an addict in a 12 step program (that's how I see it) - the steps always have to be worked on and followed. It's a lifelong commitment to ourselves and our loved ones. Not too much burden - aye?
Anyway guys, I'm here with you in support that the struggle is real, but we have no other choice if we want to get the best out of our human spirit and time left here on this wonderful earth. Fortunately, my better days outweigh my worse which comes from constant, ongoing work.
Eric, I'm happy that you found help with the BeST program and it provides a blueprint for you to succeed with hope and self-confidence. Rattlesnake, once again I pat you on the back for your perseverance. Keep investing in yourselves and take life one day at a time. Replacing negative thoughts with positive thoughts may be our new full-time jobs. It took me quite a while to mourn the loss of my previous life, career and abilities, and it still hurts - I'm human, but I try to focus on what I can do, how I can help, and purposefully find my value. I am now CEO of my CNS (central nervous system), the rest falls into place as it can.
Stay focused and hopeful. We're in it together.
Have a great day!