What aren’t PMA….

[Jensen73]

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.

 

[lgelb]

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.

 

[KimT]

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.