Janet,
Although I responded to this a few days ago, in re-reading your post, I
realize I failed to answer all of your questions.  Specifically those
concerning my symptoms and diagnosis and who prescribed the abundance of
meds.

So, here goes:  In l994 I saw a neuro-surgeon named Dr. Abu-Asal for
problems with my cervical spine.  I had pain, numbness, etc. in my right
arm and hand.  He did a two-level fusion which involved taking bone out
of my pelvic bone and wedging it between the disks.  The symptoms got
somewhat better.  Then in February of this year the symptoms returned.
They were similar but not exactly the same.  I had another MRI and it
showed that on the inside of the fused part of my spine 7 bone spurs had
grown and were pressing into my spinal cord and one more disk had gone
bad.  So he did another surgery and removed the bone spurs and fused one
more disk, this time using donor (cadavar) bone to decrease the chances
of more spurring.  I didn't get any relief from my symptoms.  He said
maybe there was nerve damage from the spurs and to give it 8 wks.  At
the end of 8 wks the symptoms were getting worse and my fingers on my
right hand seemed to be drawing inward and I could barely write.  Dr.
Abu-Asal had me see his associate, Dr. Ayman Mohamed.  He examined me
and had me go thru a series of physical maneuvers.  At that time he
gently informed me that he believed I was in the early stages of PD,
Type B.  He prescribed the whole list of meds.  I had a little trouble
with the Parlodel in the beginning and had to reduce the dose for the
first month, but within a few days my right hand was remarkably better
and I could write normally.  And the occasional slight tremor in my hand
was nearly gone.

When Dr. Mohamed first gave me the diagnosis I didn't want to believe
it.  I was sure he had made a mistake (I'm not always very trusting of
doctors myself), but when the symptoms went away I had to face the fact
that he was right.

I still don't understand why it seems I am taking so much more medicine
at this early stage than are others, but it is working and for me that
is reason enough.  And when Dr. Mohamed sent me to talk with Dr. Iacono
for a second opinion and reassurance and he concurred with the meds, it
further convinced me that for whatever reason, this medicinal regimen
must be right for me.

I am always open for new ideas, thoughts, suggestions.  And I very much
appreciate the enormous wisdom and experience of you and the others on
the list.

With love to all of you,

Claudia
53/2 mo/big bunch of meds
[log in to unmask]




janet paterson wrote:

> hi claudia
>
> you wrote:
> >Thank you so much for taking the time to write me
> >...It is very much appreciated...
>
> such kind words! thank you!
> my 'mullings' post was partially a result of your messages
> so it was a partial reply - this being the other partial!
>
> >Many people have commented on the volume of medicine I am taking.
> >It is apparently out of the ordinary...
>
> even though we are all individuals and respond differently,
> from all i've read and learned,
> it is,
> especially so for a newbie.
> what were your symptoms pre-med and pre-diagnosis?
> which doctor prescribed/recommended the precription/non-prescription
> meds?
>
> i've searched my 'archives' and 'james' archives as well as PubMed
> and have not found any medically defined references
> to parkinson's Type A or B or whatever
>
> however there are terms like 'parkinsonism' and 'parkinson's plus'
> which have been explained in the medical literature
>
> i have articles describing general tendencies: i.e.
> -pd tends to manifest as mostly tremour or mostly rigidity
> -young-onset parkies tend to have more rigidity and less tremour
> but i've never heard of a 'type' that progresses more quickly than
> others
>
> pd is the only neurological disorder
> which can be quite effectively treated medically [pharmacologically]
> i doubt that i would see a surgeon as the first step
>
> as far as i understand it
> the general meuro attitude to surgery in pd
> is that it is undertaken almost as a 'last resort'
> when meds are unable to control symptoms effectively
> or when the side-effects from the meds become disabling in themselves
>
> pallidotomy is a tad controversial
> since it leaves a permanent lesion in the brain
> which may preclude the patient's eligibility for newer options
> which are still under study but will be available down the road
> i.e. fetal cell transplants, gdnf implants etc
>
> i'm afraid i have to express some cynicism
> over the monies involved in someone promoting surgery
> at [guesstimate] $40,000 a pop in the usa,
> regardless of the individual's skills
>
> my viewpoint is coloured
> by my experiences with healthcare in other countries
> [where healthcare for every citizen
> is commonly considered a right and not a profit centre]
>
> i recall one of our dutch siblings describing the cost
> of a neurological surgery as the equivalent of $675.00 US
>
> >.. I felt that I needed to have some idea as to what I'm up
> >against so I can make informed decisions about how I want to
> >live the rest of my life ...
>
> predicting the future is a mug's game at best
> but there's no harm in 'anticipating' or 'planning'
>
> however i believe that our society has a tendency
> to anticipate only the potential disasters
> [something that one of my favourite speakers, loretta laroche,
> calls 'catastrophizing' or 'awfulizing']
>
> i believe in equal rights for fortune telling!
> if i am going to spend time/energy anticipating disasters
> i feel obligated to spend an equal amount of time/energy anticpating
> miracles!
>
> i admit to getting hot under the collar when
> i hear definitive predictions being made by anyone
> in regard to someone's life and health
> especially in regard to pd
>
> since we are all unique bio-chemical 'stews'
> with unique symptom patterns and unique med reactions
> dealing with pd [which i have heard referred to as 'a designer
> disease']
> is more of an individually applied art than a science
> [which may frustrate some of the medicos]
>
> there can be a lot of mis-information and just plain ignorance out
> there
> we need to learn as much as we can in order to be our own advocates
> and i can't think of a better resource
> than this cyber/family/data/base
>
> hmmm.....
> i wonder how many years' experience with parkinson's
> do we have in total?
> 9 for me
> 25 for don mckinley
> 50 for bev steward
> hmmmmm.....
>
> with love to you and yours
>
> from your cyber-sis
>
> janet
>
> janet [log in to unmask]