I am part now of the community of people that struggle with an undiagnosed condition :).
3 months ago, I had a brief episode of foot drop with the right leg. It lasted 10 seconds, I couldnt feel my foot or move it, then it went back to normal. After this, it never felt right to walk again. It's as if my toes stay a little longer in contact with the floor, but nothing very noticeable. I became very intolerant to exercise, meaning I feel pain in the right distal muscle of the leg everytime I use it too much. To be honest, I could only remember about ALS when I had it (that's me, lots of anxiety and hypochondriasis).
5 days after this episode, I started to feel clumsiness in my right hand, especially ring and middle fingers. My forearm felt stiff, I started having the same time of pain of my right leg, and I started feeling that it was very hard to move my fingers, which was associated with a rest tremor side by side of my fingers. At that point I could only think of ALS and I panicked. I had several episodes of numbness, mind confusion, dissociation, dizziness, etc, for about 2 weeks. All these "sensory" symptoms disappeared, and I guess I was just freaking out about it.
At that moment I saw one neurologist and 3 GPs (1 month after symptoms). They didn't see anything besides a "clonus" in my ankle jerk reflex on the same side (right side). I did a brain MRI and it was normal. Blood work showed elevated ferritin, but everything else was normal (LDH, all minerals, thyroid, all vitamins). No one investigated further my high ferritin.
The neurologist gave me an appointment 1 month later for an EMG. During this time waiting for the EMG, I got depression and had several bouts of anxiety. I started having muscle spasms, quite random ones, as well as the feared fasciculations (mostly legs, mostly distal). At that point I started living as if I had no life anymore, and I still feel like this today.
This EMG after 2 months was only a nerve conduction study, they did not do the needle EMG. Results were normal by testing my right side and comparing to left side. Since ALS very rarely affect NCSs, it didn't help me in anything. The neurologist decided to diagnose me with Functional Neurological Disorder, but didn't refer me to anyone, except a physiotherapist that helped me a lot, but unfortunately cannot help me that much without an official diagnosis.
As I saw that I wouldnt solve anything in my country (where the healthcare is quite hard to reach), I decided to fly to see an ALS specialist neurologist. He did all the neurological tests, as well as the EMG, and reassured me he could not find any neurological or neuromuscular damage, and gave me a GAD medication. This was 2 weeks ago.
I got a relief for a while, but I'm back again in the worry, since ALS takes time to develop.
At the moment, I have:
- Right thumb feels weak. Certain things I cant do anymore, but there's no atrophy.
- Right middle/ringer fingers are always stiff, especially after exercise, together with my right forearms. They shake side by side when I extend my hand. With my hands resting, they tend to curl inside my hand.
- Fasciculations in both legs, mainly distal but also on thighs. Sometimes they travel around the body, going to the butt, sometimes belly, sometimes arms.
- Very rare muscle spasms with random locations.
- Slight problem with my gait due to right leg being a bit weak.
- Occasionally, I feel that my throat does not work properly, as if I am being smothered. It's also hard to speak and swallow. This is really inconsistent and there are days that I feel fine.
- There is no muscle atrophy anywhere yet.
Symptoms don't seem to be progressing anymore. I feel like they are just not improving (the motor part). Everything else got better (mind symptoms, as well as a few sensory symptoms that I had + most of my pain).
Does it really sound like everything can come from my mind? I can only think of ALS. But I see that benign fasciculation syndrome could fit this situation as well.
It's important to mention that all symptoms started in a particularly stressful moment that I am still living until this day.
Thanks for the insight!!