axonal sensory-motor polyneuropathy
Hi everyone,
I wanted to share my story in case someone here is going through something similar. Maybe someone can relate or offer some advice.
I'm a 24-year-old guy diagnosed with axonal sensory-motor polyneuropathy with distal denervation of my lower limbs.
My symptoms first appeared (or at least became noticeable) when I was around 16. Before that, I was very active. I loved playing football (soccer), played almost every day, and I'd say I was fitter than most of my friends.
Then, almost overnight, everything changed.
I stopped being active and started avoiding PE classes because I just couldn't keep up anymore. The frustrating part was that the symptoms weren't obvious at first. People assumed I had simply become lazy or that I had gained weight and lost interest in sports.
That couldn't have been further from the truth.
I loved football, and it felt like something I loved was suddenly taken away from me. It wasn't my choice.
My first symptoms were:
- Muscle weakness
- My hands would randomly clench or tighten for no reason
- Constantly cold hands and feet
Later, I lost the ability to stand on my toes or my heels.
I was finally diagnosed when I was 19. At the time, I was devastated. My neurologist believes it's most likely genetic.
Now I'm 24, and thankfully my condition hasn't progressed much over the last few years. I still have muscle weakness, get tired much faster when walking, and I have foot drop, which makes walking more difficult.
Over the past year, I've really focused on improving my health. I've lost 20 kg (44 lbs), started eating much healthier, and overall I feel much better. Being overweight definitely wasn't helping my legs.
I exercise regularly at home to maintain as much strength as possible, eat a healthy diet, and take the supplements recommended by my doctor.
The biggest struggle for me now isn't actually the physical symptoms—it's the mental side.
Because of the muscle wasting in my lower legs, my calves are very thin. I absolutely hate wearing shorts because people notice them immediately.
Recently I went to the beach with some friends. As soon as they saw my legs, they started commenting on how thin my calves were. They probably didn't mean any harm, but it made me feel really uncomfortable.
I don't want my legs to become the topic of conversation every time I wear shorts, and I don't want to explain my condition over and over again.
I've spent years trying to build my confidence, but sometimes one comment is enough to remind me of my illness and it feels like all that confidence disappears.
It's exhausting.
I just want to live a normal life, but somehow this disease always finds a way back into my thoughts.
So I wanted to ask:
- Does anyone here have a similar condition or experience?
- How do you deal with the mental side of it?
- How have your friends and family reacted?
- Have you been able to build relationships or find a partner despite having a condition like this?
I'd really appreciate hearing from anyone who's been through something similar.
Thanks for reading.