treatedbad
Member
- Joined
- Jun 8, 2014
- Messages
- 16
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- QC
- City
- montreal
Hello all, I'd like to share with you all my experience, it has been a very odd, experience, now that I have not been diagnosed with A.L.S, I don't need to be told by a doctor to know.
Either I didn't notice my first symptoms or this has progressed at an alarming rate.
I am 29 years old from montreal
It started about 2 months ago I was very fatigued and was suffering from depersonilization, I didn't notice any weakness, atrophy or anything ( did not look for anything)
I was prescribed zoloft for my fatigue and constant worry, from that first day it went to downhill, for the past month I noticed atrophy in my right foot and calf, noticeably smaller than left (right is my dominant side)
Went to my gp, she said looks fine, but I did notice brisk reflex in my knee ( at time did not have als on my mind)
Since then I have notice considerable atrophy in all areas of my body, abs, buttocks, face throat neck face tongue hands arms, everywhere so fast, I am also a lot weaker, have footdrop and now worst of all the breathing issues.
I have been to the emergency rooms of 4 different hospitals 3 different doctors and going on 4th tommorow.
My heart rate standing is always over 140 yet everytime I go to e.r they run tests, everything's working fine.
I have referal to neuro but wait is months long. And I had to beg for that referal.
Past week has been crazy.
I don't think I'm a hypochondriac and I'm sure if any of you or someone knowledgeable to als would view me would not understand how I'm alive and walking.
I have clear weakness and atrophy hyperreflexes
Doctors tell me I have no weakness ( but how do they know how strong I was 3 weeks prior)
My breathing is labored but my chest xray clear yetif I don't tell myself to breathe I will not breathe, my heart rates through the roof, but my heart ecg and blood tests all fine 3 times?
I am missing considerable parts of my mouth can Suck my whole face in and had visible tongue atrophy I have access saliva and find it too easy to swallow as if my throat muscles are paralyzed, night sweats, weight loss fascinations, floppy wrists and ankles, very small neck muscles that have atrophied so quickly, spend all day on couch or bed, yet all dr and family and friends have labeled me as an anxiety case. Sure anxiety can cause certain things but not atrophy, not complete loss of muscles in a month?
My assumption :
I have no idea how this all progressed this quick but
My breathing problems not caused by pneumonia or lung problem its my weak breathing muscles very weak, my heart rate is due to not being able to release carbon dioxide which is causing all these problems, I know I have als but dying in the next couple days can be avoided if someone would listen to me, I tell dr I'm not trying to insult your intelligence but I'm aloud to inquire and suggest test for my health.
Today I finally found a doctor that was willing to write referalls to whatever I wanted, pulmonary test, carbon dioxide, barium swallow for my suspection of paralyzed of weakened throat muscles and emg, gonna have to do them all private and fast hopefully don't die in my sleep tonight.
It really sucks I'm young and have everything I want in life, I know I'll die of als but I'm the kind of person that'll live on a vent until paralyzed and maybe even longer hoping for cure.
Today I do feel as if I have pneumonia my chest hurts under rib cage and since I can't cough ill prolly die in my sleep tonight.
It's a shame that this could of been avoided to a certain degree, I guess in medical field is the only service where customers never right. I have documented my whole experience so that if I were to pass people can see what I've been through.
Sorry for long first post any suggestions comments are greatly appreciated, god bless you all
Either I didn't notice my first symptoms or this has progressed at an alarming rate.
I am 29 years old from montreal
It started about 2 months ago I was very fatigued and was suffering from depersonilization, I didn't notice any weakness, atrophy or anything ( did not look for anything)
I was prescribed zoloft for my fatigue and constant worry, from that first day it went to downhill, for the past month I noticed atrophy in my right foot and calf, noticeably smaller than left (right is my dominant side)
Went to my gp, she said looks fine, but I did notice brisk reflex in my knee ( at time did not have als on my mind)
Since then I have notice considerable atrophy in all areas of my body, abs, buttocks, face throat neck face tongue hands arms, everywhere so fast, I am also a lot weaker, have footdrop and now worst of all the breathing issues.
I have been to the emergency rooms of 4 different hospitals 3 different doctors and going on 4th tommorow.
My heart rate standing is always over 140 yet everytime I go to e.r they run tests, everything's working fine.
I have referal to neuro but wait is months long. And I had to beg for that referal.
Past week has been crazy.
I don't think I'm a hypochondriac and I'm sure if any of you or someone knowledgeable to als would view me would not understand how I'm alive and walking.
I have clear weakness and atrophy hyperreflexes
Doctors tell me I have no weakness ( but how do they know how strong I was 3 weeks prior)
My breathing is labored but my chest xray clear yetif I don't tell myself to breathe I will not breathe, my heart rates through the roof, but my heart ecg and blood tests all fine 3 times?
I am missing considerable parts of my mouth can Suck my whole face in and had visible tongue atrophy I have access saliva and find it too easy to swallow as if my throat muscles are paralyzed, night sweats, weight loss fascinations, floppy wrists and ankles, very small neck muscles that have atrophied so quickly, spend all day on couch or bed, yet all dr and family and friends have labeled me as an anxiety case. Sure anxiety can cause certain things but not atrophy, not complete loss of muscles in a month?
My assumption :
I have no idea how this all progressed this quick but
My breathing problems not caused by pneumonia or lung problem its my weak breathing muscles very weak, my heart rate is due to not being able to release carbon dioxide which is causing all these problems, I know I have als but dying in the next couple days can be avoided if someone would listen to me, I tell dr I'm not trying to insult your intelligence but I'm aloud to inquire and suggest test for my health.
Today I finally found a doctor that was willing to write referalls to whatever I wanted, pulmonary test, carbon dioxide, barium swallow for my suspection of paralyzed of weakened throat muscles and emg, gonna have to do them all private and fast hopefully don't die in my sleep tonight.
It really sucks I'm young and have everything I want in life, I know I'll die of als but I'm the kind of person that'll live on a vent until paralyzed and maybe even longer hoping for cure.
Today I do feel as if I have pneumonia my chest hurts under rib cage and since I can't cough ill prolly die in my sleep tonight.
It's a shame that this could of been avoided to a certain degree, I guess in medical field is the only service where customers never right. I have documented my whole experience so that if I were to pass people can see what I've been through.
Sorry for long first post any suggestions comments are greatly appreciated, god bless you all