firefly987
New member
- Joined
- Jul 24, 2023
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- PL
Hello everyone,
I wanted to thank you all for this forum and the help and support you provide for people who struggles with experiencing symptoms despite your everyday challenges.
You all are truly remarkable people.
I will try to be short as possible. I am 30F, a year and a half ago I had riding injury, fell off the horse quite badly, the main impact went to my collar bone/butt area. I went to ER, had an XRAY and there wasn't anything broken. However I was experiencing some sort of numbing in my right leg (from knee down) and some spine pain. I was on ibuprofen and my GP reffered me to neurologist, as at the moment we were post Covid, there was big waiting period and in the meantime symptoms sort of cleared up, so I did not went to neurologist as I thought issue resolved.
However, I've started noticing weakness in that leg some time after. Mostly on the top of my foot. I've continued to stay active, riding, travelling, going on hikes, I was feeling healthy and all right despite feeling of minor numbness on my top feet, which I thought it was maybe just some side effects or a pinched nerve and it will resolve with rest and some exercise.
Lately I've been feeling super tired, yawning constantly, feel out of breath at rest, the weakness spread to my other leg. My arms and legs get crampy, I've had very painful cramps in my calves. I think I was getting fasciculations before but not noticed them until one night I feel like a popcorn machine, twitching everywhere: legs, arms, stomach, back, throat, neck. Had globus sensation for few weeks and vomiting (these two now subsided). Could not sleep for few days, had myoclonic jerks while falling asleep.
I have digestion issues and I feel that I am weaker overall, I was fast walker and now I struggle to keep up. My tongue feels tired and like its been burned, I however cannot identify if my tongue twitches.
I went to private neurologist and had xrays of my back and neck, MRI of my brain, cervical and lumbar spine, many types of blood work, was refered to endocrinologist and cardiologist as well. Everything came out perfectly fine, except that I have brisk reflexes all over (determined by neuro).
Recently I've been on vacation and I was barely able to do all the walks, but I pushed trough it and still had about 15-20K steps a day, but I fee; very tired, my legs and feets are weak. Hard to keep a posture, arms and especially tendons feels crampy, sometimes when I wake up arms feel numb, but I shake it off and it sort of goes away. I can still walk, type, eat, take stairs (but somehow it feels weird), stand on my toes and heels. My feets looks like it loosing its muscle tone and I find it difficult to walk barefoot.
My doctors and family says that I am too young to have it, but I now it is not impossible, my doctors brush it off and do not refer me for an EMG, instead they put me on anti anxiety medication, which I was already on as I had mental health struggles, but nothing that severe that could prevent me from walking normally. I do hope it is anxiety, but symptoms feels to severe...I am planning to go private route and get a EMG.
I am trying to remain calm and I know you don't diagnose people, but would be very grateful if you could just review symptoms or give me some advices on how to communicate and advocate for myself better. However, If I get diagnosed there is only one drug in my country and no clinical trials, so there is no rush probably...
Thank you for your time, patience and understanding.
I wanted to thank you all for this forum and the help and support you provide for people who struggles with experiencing symptoms despite your everyday challenges.
You all are truly remarkable people.
I will try to be short as possible. I am 30F, a year and a half ago I had riding injury, fell off the horse quite badly, the main impact went to my collar bone/butt area. I went to ER, had an XRAY and there wasn't anything broken. However I was experiencing some sort of numbing in my right leg (from knee down) and some spine pain. I was on ibuprofen and my GP reffered me to neurologist, as at the moment we were post Covid, there was big waiting period and in the meantime symptoms sort of cleared up, so I did not went to neurologist as I thought issue resolved.
However, I've started noticing weakness in that leg some time after. Mostly on the top of my foot. I've continued to stay active, riding, travelling, going on hikes, I was feeling healthy and all right despite feeling of minor numbness on my top feet, which I thought it was maybe just some side effects or a pinched nerve and it will resolve with rest and some exercise.
Lately I've been feeling super tired, yawning constantly, feel out of breath at rest, the weakness spread to my other leg. My arms and legs get crampy, I've had very painful cramps in my calves. I think I was getting fasciculations before but not noticed them until one night I feel like a popcorn machine, twitching everywhere: legs, arms, stomach, back, throat, neck. Had globus sensation for few weeks and vomiting (these two now subsided). Could not sleep for few days, had myoclonic jerks while falling asleep.
I have digestion issues and I feel that I am weaker overall, I was fast walker and now I struggle to keep up. My tongue feels tired and like its been burned, I however cannot identify if my tongue twitches.
I went to private neurologist and had xrays of my back and neck, MRI of my brain, cervical and lumbar spine, many types of blood work, was refered to endocrinologist and cardiologist as well. Everything came out perfectly fine, except that I have brisk reflexes all over (determined by neuro).
Recently I've been on vacation and I was barely able to do all the walks, but I pushed trough it and still had about 15-20K steps a day, but I fee; very tired, my legs and feets are weak. Hard to keep a posture, arms and especially tendons feels crampy, sometimes when I wake up arms feel numb, but I shake it off and it sort of goes away. I can still walk, type, eat, take stairs (but somehow it feels weird), stand on my toes and heels. My feets looks like it loosing its muscle tone and I find it difficult to walk barefoot.
My doctors and family says that I am too young to have it, but I now it is not impossible, my doctors brush it off and do not refer me for an EMG, instead they put me on anti anxiety medication, which I was already on as I had mental health struggles, but nothing that severe that could prevent me from walking normally. I do hope it is anxiety, but symptoms feels to severe...I am planning to go private route and get a EMG.
I am trying to remain calm and I know you don't diagnose people, but would be very grateful if you could just review symptoms or give me some advices on how to communicate and advocate for myself better. However, If I get diagnosed there is only one drug in my country and no clinical trials, so there is no rush probably...
Thank you for your time, patience and understanding.
Last edited by a moderator: