What aren’t PMA….

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Jensen73

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Joined
Aug 10, 2022
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11
Reason
DX MND
Diagnosis
08/2022
Country
US
State
FL
City
Zephyrhills
able to be prescribed the ALS drugs?
participate in ALS trials?
able to use the ALS resources such as a loaner chair?
studied for a cure like ALS?
Mechanism is similar. End result is respiratory failure. Same struggles as an ALS patient; adls, etc.
 
They generally are -- PMA is just the lower-motor neuron dominant variant of ALS -- but if not, I'll bet at this stage, you can find a doc to code you up as ALS. PMA is pretty much integrated into the ALS spectrum and not always even considered a separate entity. And often PMA converts to ALS, so I would certainly ask for re-evaluation periodically.

If you are not getting ALS-like help from an ALS clinic, I'd find another clinic, because that makes no sense.
 
There's a new ALS doctor in Orlando who, according to people in my support group, doesn't have the long wait times. I would get in with someone and get them to just change your code. I probably started out as PMA but they coded me as ALS and provided the letters with ALS included in them. At the very least, I was lower motor neuron dominant ALS and Mayo didn't differentiate between PMA and ALS.
 
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