Print

Print


Hi, Kathy -

Your neurologist is on the right track in sending you to a PD specialist -
often referred to as a "movement disorder specialist."  If you *are*
diagnosed as having PD, one of the first things many list members will tell
you is to find a movement disorder specialist and stay with him/her for
treatment.

 >If you were me, what kinds of questions would you be asking?  Do you think
 there's any danger of being mis-diagnosed?  Ever hear of anybody who was?

If you go to a movement disorder specialist, there's little chance you'll be
mis-diagnosed.  The more usual course is for PD to go unrecognized for many
years, especially in an early-onset patient.  Some doctors confuse PD with
essential tremor, but a specialist won't have any difficulty telling the
difference.

The usual tests for PD are physical ones, not blood tests, MRIs, or the like.
 The neuro will be testing for "cogwheel" rigidity of your limbs, for one
thing, and will ask you to rapidly open and close your fingers and so forth.
If the tests indicate to the neuro that you show signs of PD, then you should
be prepared to ask what the plan is for medication.  Different doctors have
different philosophies about how soon to start PD meds.  Sinemet is
considered the "gold standard" of PD meds, and a positive response to it is
considered further evidence of PD.  However, there are other medications that
your doctor may prefer to prescribe first, depending on your level of need.

Personally, knowing what I know now about PD, I'd want to know the doctor's
philosophy about how much of a "partner" you'll be in your care.  I'd ask
specifically how he feels about your experimenting with slight alterations in
dosage and frequency of meds.  Bear in mind that the PD meds are there to
help you function better and feel better.  They're not going to cure
anything, so if a dose of medication seems to be too much, and is making you
feel worse, you should have the doctor's approval to try decreasing the dose
or taking it less frequently.

 While you're new to this, I'm sure the doctor will want to know of any
changes you feel you'd like to make, and would like to approve changes in
advance.  That only makes sense.  As time goes on, though, you'll want a
doctor who will trust your judgement as you titrate your meds to a
comfortable level.  That's my personal opinion, btw, and not necessarily the
opinion of others on the list.  However, it's one my husband's PD specialist
agrees with.

Once you see the specialist, feel free to write back to the list telling us
the meds you've been prescribed, if any.  At that point listmembers can be of
more help to you.  You should know, too, that the PD list has extensive
archives on almost any topic, including tons of stuff on meds.

You've come to exactly the right place for help in dealing with PD, if that
is the diagnosis.  There are many early-onset PWP (People with Parkinson's)
on the list, and they will understand the issues that are specific to people
who are still trying to work, perhaps raise a family, and deal with PD at the
same time.  This list is also the best source of information about PD, both
the tried and true, and new developments.  Congratulations of making such an
empowering choice.

The best of luck to you.

Margie Swindler, cg (caregiver) for Dick, 55 (years of age)/18 (years since
diagnosis)