help1127
Active member
- Joined
- Nov 19, 2013
- Messages
- 95
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- FL
- City
- Orlando
I need support and I dont know who else to turn too. I realize we all have our path we need to walk alone and I know you all have been diagnosed with ALS but I really dont know who else to turn to in this time as no one understands as they only see me as a person who is not dying at the moment.
I'm speaking as a person who wants to look forward to all the great things life has to offer but cant live them.
I wish I could say with certainty that I am sure I dont have ALS but I am not! I been through the ringer and everything points to ALS my clinicals are not normal, my emg is not normal but they cant find weakness and that's what's killing me as I can when walking down stairs, going to the gym, doing normal tasks just beat me up to the point where I'm not able to function and need to sleep. If this is all in my head then I'm really one messed up individual that can create symptoms as hyper reflexes, Hoffman, clones, etc.
I know my original username doesn't help " help1127" sounds nuts. My name is Stephen and I'm 42 years old father 9f two beautiful kids "17" and "15". I lost everything but that's not to make people feel sorry for me but to bring awareness to whatever I have as it has destroyed my life.
My 1 neurologist said if its ALS all this time it wouldn't matter as there is no cure. My other neurologist says that I dont have it as there is no clinical weakness in the 2 plus years of following me.
We need to look at these issues as I'm not the only one and make the medical community aware that we need better testing tools for a diagnostic.
I'm sorry but this is true. I know I have something and it's more than anxiety as many before me have been told the same.
I'm speaking as a person who wants to look forward to all the great things life has to offer but cant live them.
I wish I could say with certainty that I am sure I dont have ALS but I am not! I been through the ringer and everything points to ALS my clinicals are not normal, my emg is not normal but they cant find weakness and that's what's killing me as I can when walking down stairs, going to the gym, doing normal tasks just beat me up to the point where I'm not able to function and need to sleep. If this is all in my head then I'm really one messed up individual that can create symptoms as hyper reflexes, Hoffman, clones, etc.
I know my original username doesn't help " help1127" sounds nuts. My name is Stephen and I'm 42 years old father 9f two beautiful kids "17" and "15". I lost everything but that's not to make people feel sorry for me but to bring awareness to whatever I have as it has destroyed my life.
My 1 neurologist said if its ALS all this time it wouldn't matter as there is no cure. My other neurologist says that I dont have it as there is no clinical weakness in the 2 plus years of following me.
We need to look at these issues as I'm not the only one and make the medical community aware that we need better testing tools for a diagnostic.
I'm sorry but this is true. I know I have something and it's more than anxiety as many before me have been told the same.