A Month or 2 with PLS

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TheMackle

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Joined
Oct 29, 2014
Messages
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Learn about ALS
Country
WA
State
Washington
City
North Bend
Hello.

First off I have been here a couple of times and have offended. I am sorry. I am not blaming the stress but for many of us in the prior to diagnosed stage it freaking sucks. So I apologize for my inappropriate behavior.

My upper motor neuron symptoms progressed to the point when my doctors could no longer withhold the info. My painful cramping in my hands that has led to contracture, to the inability to walk from my painful tibias for 4 months was enough for the DX. I am grateful and do not know what to say here. It might turn to ALS but I believe not. The thing is that once your fears come true, your whole attitude changes. Now I am the opposite. No chance in hell I will let this be ALS. Sorry but my attitude has to be my greatest weapon. I do not need luck. And if god forbid this does turn to ALS...big deal I will handle that if and when it comes to it.

i have the right attitude to handle anything!


Again, I apologize for my prior behavior.
 

Tractor Boy

Distinguished member
Joined
Nov 1, 2014
Messages
165
Reason
PALS
Diagnosis
03/2012
Country
US
State
Michigan
City
Belleville
Does this mean you are ready to join our "special death douchebag club" now (as you've stated so eloquently)?
 

TheMackle

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Oct 29, 2014
Messages
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Reason
Learn about ALS
Country
WA
State
Washington
City
North Bend
No and as you see I apologized twice. Feel free to never let me forget.

On another note. My doc asked me to take a blood test last eeek. It just came back high aldolase. They want me to come in again and retest my legs EMG. This is my third. First was legs and it eas dirty not filthy. Second arms clean. Now they want to retest legs. Is high aldolase bad?
 

affected

Guru status reached
Joined
Apr 26, 2013
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12,577
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05/2013
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OZ
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lala land
Sounds to me that you are still not officially diagnosed. I believe PLS takes an awfully long time to be definite. Maybe you need to contain your posts to the DIHALS section until then?
 

TheMackle

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Joined
Oct 29, 2014
Messages
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Learn about ALS
Country
WA
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City
North Bend
Thanks for anwering my question about aldolase
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
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00/0000
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IL
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SMALL TOWN IN
You're quite welcome!
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,707
Reason
PALS
Diagnosis
12/2016
Country
US
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NC
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Central NC
Nope. High Aldolase has no connection to MND. It is an indicator of another muscular disease, liver disease and Polio but not any MND.

I'm sure you Google'd that... being you have Google'd ALS/PLS endlessly in an attempt to convince yourself you have it.
 

Bad Balance

Senior member
Joined
Dec 10, 2010
Messages
814
Reason
PALS
Diagnosis
12/2010
Country
US
State
GA
City
Atlanta
Yep too early to join the club yet
 

IhavePLS

Distinguished member
Joined
Apr 17, 2011
Messages
277
Reason
DX UMND/PLS
Diagnosis
12/2010
Country
US
State
Pennsylvania
City
SW
No chance in hell I will let this be ALS. Sorry but my attitude has to be my greatest weapon. I do not need luck.

And if god forbid this does turn to ALS...big deal I will handle that if and when it comes to it....i have the right attitude to handle anything!
To tell you the truth, I couldn't help but to note the conflict inherent in your comments above -- not to mention the pathological ambivalence:

"No chance in hell I will let this be ALS" (the unfortunate truth is that you don't have a choice -- ALS chooses you. You don't choose it).

"And if...this does turn to ALS...big deal..." (the above "I refuse to have ALS!" comments notwithstanding, you are continuing to ruminate on the possibilities -- it is fairly certain that you have not convinced yourself of anything...

And why would you want to join this club anyway? It ain't your Saturday night Bridge club....

That you are being brought back for testing over and over implies that no CLEAR evidence of MND has been found. Until you have been diagnosed, just get on with your life! Even people who HAVE been diagnosed with MND don't spend 23 hours a day ruminating on it (instead, most spend their time doing everything else BUT focusing on this crap).

Trust me, you don't want this....ever, never.
 
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