PLS or ALS or something else?

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Tamylin

New member
Joined
Mar 1, 2022
Messages
2
Reason
DX UMND/PLS
Diagnosis
06/2020
Country
US
State
CA
City
Greeneville
In 2020 I was diagnosed with PLS. At the time my Neurologist said he wanted to consult with ALS specialist, and that if I developed muscle atrophy in the next year he would change the diagnosis. Problem was that was the last time I would see him as my insurance changed and we moved out of state.
I have developed atrophy in hands,feet,shoulders, arms,and legs.
I went to a neurologist in new state and had what I considered to be the worst evaluation ever…. Never looked at my body, did reflex test on my Achilles’ tendon through my boots. I could go on and on.
My mother passed away fro ALS in 1972, I don’t believe my mother had the normal path as she walked almost to the end ( became bedridden 3 mos prior to death)
I’m just at a loss and don’t know what to do anymore. I’m getting weaker and less able to do things and it’s very hard to ignore.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,279
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You definitely need to go to an ALS clinic and get an evaluation from an ALS specialist which it sounds like you never had. If you have PLS or ALS you need to be followed. If you have something else you need to be diagnosed You should have genetic testing too if it is an mnd.
what big university type hospital are you reasonably near? If you call and say you had a pls diagnosis they should see you
 

Tamylin

New member
Joined
Mar 1, 2022
Messages
2
Reason
DX UMND/PLS
Diagnosis
06/2020
Country
US
State
CA
City
Greeneville
I went to a neurologist in Knoxville TN. At the University of TN . I’m still waiting for the results of genetic testing… I will look into an ALS clinic, thank you.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,279
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Are you in Tennessee or California? People may be able to recommend if you clarify your location
 
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