To all,
I know I've barged into this listserv without properly introducing
myself. I'm waiting for the symptoms to go away so I'm reluctant to join the
discussion with personal information that comes out & I have to see it &
maybe admit to it. Instead of hoping its not true. (which maybe its not)
I have an appointment with a neuro who is in practice with a well known
PD research/specialist. I would appreciate your imput on right & wrong ways
to approach an evalution for early onset symptoms.
I quoted the following two messages to begin my intro.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++
Date: 96-01-07 12:41:11 EST From:[log in to unmask] (Frank A. Nagy
<snip> Having said all that, I must admit to being ENRAGED at the fact that
her PD has gone un-diagnosed for (as near as we can tell) five years. At the
outset of symptoms she insisted (based on the diagnosis of her chiropractor)
that she was experiencing a pinched nerve in her shoulder and that her
vitamins, massage, and chiropractor would straighten the matter out in short
order. Five years, probably tons of vitamins, and close to 400 chiropractic
treatments (three different chiropractors), bunches of accupuncture and
accupressure treatments, God-knows-how-many massages, and numerous tilts at
many more windmills later, I was finally able to convince her to visit
Cleveland clinic where her PD was diagnosed and a treatment regimen
prescribed. The rate of progression seems to have slowed somewhat since but I
can't help wonder how much pain and suffering she has been caused in the
intermediate five years since her symptoms first appeared. End of rant...
sorry.
(I also want to apologize if I've stepped on any "alternative medicine toes"
out there. I appen to believe that there is a valuable place for alternative
medicine, but we all need to know when to say "this is beyond my capabilities
and/or this isn't working; let's try something else." I also believe that she
was partially responsible to say "enough is enough.")
Date: 06 Jan 96 16:07:14 EST From: Joan Dykstra <[log in to unmask]>
I had a similar experience with "pain in the shoulder." Just before I
started seeing doctors for my tremor I started seeing doctors for 24 hour
pain in my shoulder. X-rays showed nothing--and one doctor wanted to try
shooting cortisone into it. I resisted. Then I found a very caring doctor
who listened and worked with me and prescribed exercises and ice and heat
treatments. It took very hard work for about three months, but the shoulder
gradually lost its pain and I began to be able to move my arm freely again.
By then I had found enough information in the library to know that I had a
"frozen shoulder." About the same time I found research that said that 20%
of Parkinson's patients have a "Frozen shoulder" as a precursor to the PD.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++
<End of quotes>
While I realize that only a qualified dr. can diagnose, I would appreciate:
1. Any information based on personal experiences/observations of
early/pre-PD diagnosis symptoms
2. Which of the following possible symptoms I should share with the neuro,
3. How can I approach the dr. as an intellegent well informed patient
without seeming like I'm doing the doctoring reasearch and diagnosising. ( I
thought maybe a simple approach. "I'd like an evaluation for early
Parkinson's. ___Here are a list of my symptoms____ " Or forget the list
and memorize or wait for him to ask?
I'm 32 years old, married with a 6 year old son.
I'm a granddaughter of a PD in another state far away. I don't know much
about the illness from her experiences since I've only known about her a few
years. I also have no influences in their lives--they know more than I do
also since they've been going through this for many years. I don't know them
well enough yet to ask much info about the progression of her symptoms.
Here's a list of my concerns:
1. Neck shoulder stiffness for at least 3 months. No injuries. Range of
motion is incredibly difficult & slightly painful. I've tried everything
(change in pillows, beds, sofas, I was out of state, back home, massage,
baths, jacuzzis, 3 different massage devices ) including ignoring it &
nothing has brought any permanant relief. This was the straw that triggered a
curiosity about PD symptoms.
2. Depression. Forever really. But to where I cry at the least thing, I
feel sad, hopeless, lonely, etc, etc, etc. For no real reason at all. No
sexual desire _worse_ than usual. I keep trying to think positive and not
let emotions control my thinking, which keeps me from drowning. But I still
feel like PMS for months instead of one week a month.
3. Fatigue. Everything takes effort that's exhasting. I'm so slow
getting everything done. I'm trying so hard to keep the house clean & I just
can't seem to catch up or get enough things done.
4. Hands, feet, leg & arms "fall asleep" and tingle very often &
_without_ circulation getting cut off. (Like sitting on your foot & you get
the tingles.)
5. Irritable beyond description.
6. Dry eyes (could be due to eye surgery 3 months ago) I find I have to
remind myself to blink.
