From: "Steve Harris" <sbharris@ix.RETICULATEDOBJECTcom.com>
Subject: Re: Motor Neuron Disease - Info or Suggestions ???
Date: Sat, 26 Apr 2003 17:05:41 -0700
"Jill Ruddell" <firstname.lastname@example.org> wrote in message
> Perhaps someone out there can help me with a similar case or a
> My Dad, age 72, living in Scotland, has just been diagnosed with Motor
> Neuron Disease after a muscle biopsy taken after 7 weeks in the
> hospital. He was admitted with breathing difficulty and a day later
> suffered respitory failure. This was his only symptom and was not
> evident at any time prior to hospitalisation. He is now not able to
> clear his CO2 and relies on a C-Pap mask to get him through the day. He
> is also very weak, again a symptom that appeared very suddenly after
> Since Dad was diagnosed I have been searching the web but it appears
> that his symptoms are not typical as an onset for ALS/MND. The docs in
> their wisdom are now going to send Dad home with this C-Pap mask and
> have said there is no cure nor is there anything more they can do for
Can't comment on a specific patient, but suffering
respiratory failure as an "only symptom" without even any
previous weakness of the arms or legs (how did he get
around?), is pretty damn weird "motor neuron disease"? This
can't be right. If you're sure about his pre-hospital
function, somebody here is out to lunch.
He had no sensory problems at all (tingling, numbness?).
You'd hate to miss a case of Guillain-Barrè.
If there is no sensory component, for a guy whose major
weakness is of the respiratory muscles, it would be more
commonly a stroke of the brain stem if it's neurological
(has he had an MRI?). What kind of limb weakness are you
seeing? Is this a guy weak because he's ill, or is he
really semi-paralysed and can't even pick up a napkin? If
the former, I think I'd regard the muscle biopsy results as
simply being wrong. Sometimes pathologists see only what
they want (or are asked for).
Get a second opinion. Raise a stink. Some of these things
that aren't non-progressive (stroke) get better with time.
If he's hospiced with a CPAP, he won't get that neuro-rehab
OTOH, if he really is losing motor function in a major way
*everywhere* with normal sensation, and there are other good
reasons to think he has ALS, then there's not much you can
do, and his docs are taking the most humane course.