As an older person, I have had to twice diagnose and treat my own illnesses myself. Unless your symptoms exactly fit those in a medical book, and there is not a pill that will fix the problem, you must be your own doctor. RU-vid commenters will describe their symptoms and can be very helpful.
Very well said. It took me around 5 years to get my FND diagnosis, and that’s just one of my many medical conditions. I've faced medical gaslighting for yonks being a young woman and it really messed with me for a long time. My FND diagnosis stung, mostly because my neuro just said "go to therapy, good luck" and that was it. There are no resources available where I live.
I’m so sorry to hear that. My experience has been basically the same with no real help. Honestly connecting with the disabled and chronically ill community has been a lifeline for me.
I also have FND. I consider myself to be stupid-lucky: the first neurologist I saw had a lot of experience with FND and was able to diagnose me with Functional Movement Disorder at my first visit. I had no idea how serious my condition was at the time or how lucky I was that I had the diagnosis so quickly. At the time of my diagnosis, I just had dystonia that was more of an annoyance. However I'm now experiencing much severe dystonia as well as vocal tics, functional seizures (so no driving), very low tolerance for activity (and no working), and a lot of other symptoms popping in every once in a while such as transient paralysis in my legs. That's always fun when I'm walking down the stairs 😂. But I haven't had to go to the ER or anything like that yet, and my neurologist thankfully referred me to someone who has seen FND before when I got an EEG for the seizures. I haven't had anyone not take me seriously yet because the few doctors I've had to see have seen this before. I'm really hoping that continues, but if I hit my head falling from paralysis or get injured while seizing I'm sure I could run into something like what you've described. I don't have very much confidence that anyone in the ER will know what to do with me.
Wow I am so so glad that you were taken seriously and diagnosed quickly! Are you in the UK by chance? My current doctors don’t even really know what FND is at this point since I was diagnosed by the Mayo Clinic and get treatment/ care from a local neurologist
@@Thecozychaotic No, I'm in the US and see a specialist in Colorado. It's a really good neurology clinic. There's also a clinic here that specializes in people diagnosed with PNES, if by chance you feel it's worth the distance. Dr. Strom I believe is who you want to see.
Victim blaming is easier than 'I don't know'. I suspect doctors like easy cases because they can feel good about a drug or surgery that will probably work. Chronic illness is not that.
