Re: Conjecturing

[Sherri Cave <caves@xxxxxxx>]

                                 RTK.NET Mail 136694   Mar 28 23:27:50 1996
>
> Perhaps the disruptions of the autonomic neural and hormonal and chemical
> system by Parkinsonian and diabetic and other immune system disorders cause
> the burning feet and/or restless leg symptoms.
>
Since you're conjecturing, please allow me to participate.  I never
thought about neuropathy as a PD problem, but we have plenty of anecdotal
evidence on this list to say that it is.  One has to wonder if the same
meds that are used to address neuropathy in AIDS patients might be
effective for PD and Diabetic patients as well.
-----
Peace and joy
Mary Ann
Zippo's mom


I can't resist an opportunity to conjecture either.  I'm way behind the
times on AIDS info., but I hope your message indicates that some
helpful drugs have been found for AIDS neuropathy.  About three years ago
I had a few friends with AIDS neuropathy, and none of the usual treatments
were providing substantial relief--except adequate pain relief, often
morphine family drugs, but they had to fight hard to get enough to bring
them from "excruciating" to "almost bearable"...another subject I could
spill many furious lines over if I don't stop myself now!

One friend and I had detailed discussions over many months about his
neuropathy treatments.  The doctors he spoke with generally believed
there were clear differences between AIDS neuropathy and other neuropathies,
and I'm pretty sure there were some studies behind their belief that
standard treatments were not helpful for AIDS neuropathy.  My friend,
however, was helped by standard treatments, the main one involved
electrical stimulation of some kind, possibly a tens unit.  He believed
that his neuropathy may well not have been AIDS related, and complained
often that once you are diagnosed with a major illness, doctors try to
attribute every symptom you have to that illness.  Many of disease profile
distinctions lead to important treatment criteria, however, it can also
mean that symptoms that don't fit the expect pattern get dismissed and
overlooked and treatments that may be helpful will not be offered even
when the more standard methods have all been tried.  Of course, my friend
lived a few extra years (and they were good years), because his toxoplacemia
encephalitis bout was cured with a treatment not usually tried with AIDS TE,
 so maybe he
was a bit biased.

Thinking of the anecdotal evidence here of neuropathy with PD, I also
wonder if it might be much more common than most people think, especially
if the symptoms are frequently much milder.  I remember the recent messages
about noticing carpal tunnel syndrome after a pallidotomy, probably
because the symptoms weren't great enough to "register" when the other
PD symptoms were more pronounced.  It's easy to imagine how people
experiencing these symptoms to a more debilitating degree could then
be told, even by doctors experienced in treating PD, that these symptoms
weren't supposed to happen with Parkinson's.

Sherri
caves@xxxxxxx