Tb12
Member
- Joined
- Mar 15, 2013
- Messages
- 27
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
Hi guys,
hope you are having a good day.
here is my journey so far, to give you some insight, I really appreciate you taking your time to read this.
8- 10 years of progressive symptoms. I have had so much tests and seen so many neurologists and neuromuscular specialists and still no answers. I Have had 6 emgs in the first 4 years of Symtoms and nothing showed up, EMG only done on arms, legs, cheek. Last Neuro I saw in 2017, thought I might have MS due to my bladder symptoms, once that came back clear he was disinterested.
my Symptoms:
Fasciculations
Cramps
Weakness ( perceived, drs can't feel it on clinical, but I feel it )
Tremors under muscle stress, load
Nerve pain
Fatigue
Joint pain
Muscle tightness
Bladder issues/ bladder not emptying all the way/weak stream
sphincter weakness
Urological and sexual issues
sometimes my thumb on left hand has a mind of its own and doesn't do what I want it to do, like if I'm trying to text and it just isn't going to certain letters etc, only sometimes
Super low testosterone
New symptom started a year ago now, out of the blue about a year ago i kept waking up during sleep with what it felt like i was holding my breath, or a big sniff in would wake me up, or as I just dove off to sleep its like my body stops breathing and I'm aroused awake..
I was Diagnosed with mild sleep apnea and lung function was normal but low end, mild restriction shown. Put on cpap machine, doesnt help much, still waking up cause I'm not breathing, feels like my throat closes or my lungs etc just stop beathing and I'm aroused awake, or distorted breathing pattern feeling waking me up, or noise in throat. I do feel some breathlessness doing certain things.
I know its hard to explain via writing about how severe symptoms are, so I do want to add that I can still walk, talk, run, type etc and everything a healthy person can.
I'm very concerned this could be ALS?
thank you for your time
Trent.
hope you are having a good day.
here is my journey so far, to give you some insight, I really appreciate you taking your time to read this.
8- 10 years of progressive symptoms. I have had so much tests and seen so many neurologists and neuromuscular specialists and still no answers. I Have had 6 emgs in the first 4 years of Symtoms and nothing showed up, EMG only done on arms, legs, cheek. Last Neuro I saw in 2017, thought I might have MS due to my bladder symptoms, once that came back clear he was disinterested.
my Symptoms:
Fasciculations
Cramps
Weakness ( perceived, drs can't feel it on clinical, but I feel it )
Tremors under muscle stress, load
Nerve pain
Fatigue
Joint pain
Muscle tightness
Bladder issues/ bladder not emptying all the way/weak stream
sphincter weakness
Urological and sexual issues
sometimes my thumb on left hand has a mind of its own and doesn't do what I want it to do, like if I'm trying to text and it just isn't going to certain letters etc, only sometimes
Super low testosterone
New symptom started a year ago now, out of the blue about a year ago i kept waking up during sleep with what it felt like i was holding my breath, or a big sniff in would wake me up, or as I just dove off to sleep its like my body stops breathing and I'm aroused awake..
I was Diagnosed with mild sleep apnea and lung function was normal but low end, mild restriction shown. Put on cpap machine, doesnt help much, still waking up cause I'm not breathing, feels like my throat closes or my lungs etc just stop beathing and I'm aroused awake, or distorted breathing pattern feeling waking me up, or noise in throat. I do feel some breathlessness doing certain things.
I know its hard to explain via writing about how severe symptoms are, so I do want to add that I can still walk, talk, run, type etc and everything a healthy person can.
I'm very concerned this could be ALS?
thank you for your time
Trent.