My recent complications with Doctors
Photos-
1: Cover page with my parent’s cute rescue kitty
2: My grandparents & brother visiting me at the PT/OT rehab facility
3: My bald spots that seem to keep getting overlooked by drs and are growing
4: Freedom!! Finally got out
5: The wheelchair I ended up buying the 2nd time my legs quit working
6: The Kitty claiming my chair as his🤣
7: Making the most outta the situation- dress up day at work- I was marshmallow, co teachers were yellow & Flo (rhyme without reason)
8: Homecoming- Made mums for my wheels
9: Swollen hands- my whole body is swollen
10: I had to get an electric chair since there’s days I can’t move my arms and hands, this will help me out since it has a remote control for my parents to use when taking me places on the bad days.
Story time:
I woke up on 7/17 unable to move my legs. After laying in bed a few hours, I called my mom over to help me. Called my neurologist and was told to come in- we live 1 1/2 hours away from him. Went in for admitted to the hospital to run tests. All came back “clear” nothing’s wrong. Well I’m not making this up. “It’s in your head, you’re just stressed.” Umm I’m a teacher aide, it’s summer break, I’m not stressed about anything. Finally came back with FND- functional neurological disorder. Whenever I tell people that, they just say that’s the term they give when they don’t know what it is. Was told go to intensive PT & OT rehab hospital. Ok, went for 10 days. I was able to walk with a rollator by the time I left! Then 2 weeks later, legs went out, 1 week after- unable to move up to the hips. Neuro sent me back to hospital to run tests- they were the exact SAME tests… “nothings wrong” “tests are all clear” “go somewhere else” The neuro on call hit my knee with the hammer, my fat jiggled, & said “see there are reflexes” umm no that was the fat on my thighs🙄 My PCP said we’re sending you to a bigger facility with different neurologist. Well considering the ones in our area have written me off sounds good.
*I’ve had so many issues and they just keep saying I’m fine. Now I can’t move my arms and hands when I wake up, some days the movement comes back, other days I’m stiff all day and my hands are clamped up. A couple weeks ago I wasn’t able to speak more than 1-2 single syllable words at a time for a few days. I was having to find & force the words & couldn’t move my arms/hands or legs. Luckily the speech has come back for the most part.
*Side note the testing is not coming back clear, looking at the levels of the blood work and some of them are out of range, but “it’s all normal/clear.”
*So if anyone has any ideas on what it could be, I’m open to suggestions.*
Living with Functional Neurological Disorder (FND) can be an incredibly isolating and confusing experience, especially when faced with unclear or dismissive medical responses. FND is a neurological condition where patients experience genuine symptoms such as paralysis, spasms, or speech difficulties, but standard tests often show no clear physical cause. This leads many doctors to incorrectly assume the problem is psychological or 'all in your head,' which can add to the frustration and emotional burden of those affected. In my journey, waking up unable to move my legs or arms, and sometimes losing the ability to speak clearly, has been terrifying. The temporary nature of some symptoms, combined with inconclusive tests, makes diagnosis and treatment complex. Despite multiple hospital visits and extensive testing, I was initially told that my symptoms were stress-related. However, I know stress wasn’t the cause as I was on summer break and not dealing with typical stressors a teacher aide might have. Functional Neurological Disorder often requires specialized neurologists and rehabilitation programs including physical therapy (PT) and occupational therapy (OT) to regain function. Intensive PT and OT rehab hospitals can be vital in helping regain movement and independence, as experienced with using assistive aids such as rollators or wheelchairs. For days when movement is severely limited, electric wheelchairs controlled by caregivers can improve quality of life considerably. It’s also important to monitor associated symptoms like swelling and other systemic irregularities that might show up in blood work, though these might not always be clearly linked to FND. Unfortunately, some doctors may overlook or underestimate these clues. Support from family, friends, and communities can make a huge difference. My grandparents, brother, and caring pets have helped me emotionally through these tough times. Engaging in lighthearted activities like dress-up days helps maintain a positive outlook. If you or someone you know is going through similar unexplained neurological symptoms, it’s crucial to seek a neurologist familiar with FND or functional movement disorders. Keep advocating for yourself, documenting symptoms carefully, and considering comprehensive rehab approaches. Remember, FND is a recognized medical condition. While complex, with the right therapies and support, many regain significant function. Sharing experiences openly helps raise awareness and fosters understanding in both medical fields and communities.
Doctors can be so frustrating when they don't listen. Keep advocating for yourself, you deserve proper care!