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help1127

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92
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Country
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State
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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.
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,173
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Have you seen Dr Augustus Joseph on Lee Road?
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,239
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Stephen (thank you for sharing your name),

ShiftKicker laid out 3 reasons relating to actual MND that would justify your return: positive EMG findings, a positive exam, a clinical diagnosis. You have had five years of posts without any of these coming to fruition.

Imagine how thrilled any PALS here would be to have had five years of health instead of ALS. Clonus, abnormal reflexes and a Hoffman sign are so far from being unable to stand, sit, walk, speak, eat and breathe that I certainly feel ridiculous typing this.

You haven't fulfilled any of the conditions she laid out here. So I could delete this thread but I am going to try one more time to get through to you, since you are a human in distress. Then I will close it as there is nothing left to say.

You want "to look forward to all the great things in life" but "can't live them?" Do you understand who's reading this? The PALS who actually can't live that life, and the heroic CALS who are taking care of those PALS.

If you are looking for sympathy about weakness and needing more sleep, you are in the wrong place, buddy. You are walking stairs and going to the gym five years after your first post! There is no PALS with your history. The fault is not in the diagnostic process, but in your unfounded insistence that you have undiagnosed ALS. If you have something else that is treatable, you're in a fine city to find that out, but we can't do that here.

You do not belong here and never will. You belong in a therapist's office sorting out why you are obsessed with a disease you don't have and unsurprisingly ruining your life in the process, so you can live the life you say you want, and anyone who cares about you, such as your kids, can live a better life along with you.

Go there, where you can do yourself some good, and stay away from this Forum, where you are helping no one, least of all yourself. Don't start a new thread. If you do, I will delete it since you have had your say, and no one here wants to read more about your self-imposed prison, nor can we help you break out. Only you and a therapist can do that. Print this out and tape it to your mirror.

Best wishes for the bright future you can still have,
Laurie
 
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