Curiosity Killed The Cat

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Deborah:

And satisfaction brought it back.

What happened on Monday with the flora-deoxy-hydro-glucose PET scan?

Message: 19

Date: Sun, 11 Aug 2002 11:28:53 -0400

Subject: Fw: You are NOT going to believe the results of the F-DOPA PET

Friends,

I had the F-DOPA PET scan at Long Island Jewish Medical Center Research

Institute in Long Island, NY on Friday. I am scheduled for a

flora-deoxy-hydro-glucose PET scan tomorrow (Monday). They want to make

extremely sure of their results.

Results: VERY VERY early Parkinson's disease on the right side of the

brain only! In the 4 doctors round table with us response..... I should be

tested yearly and out dancing..... not even on meds at this time..... much

less told that I am in the final stages of MSA.

What they found is a gross neglect of my prior neurologist and

neurosurgeons to " pin " me into an alphabet soup disease when it looks like

the problem was staring them right in the face. Type 1 Chiari

malformation. This is a birth defect that first shows up between 35-45

years of age and has ALL of the same symptoms of PD and PD Plus

disorders.... does not respond to dopamine related meds and progresses

rapidly if left untreated. Permanent brain damage is done if not operated

on within the first 2 years of symptoms. Causes heart problems,, visual

problems, respiratory problems, sleep problems, blood pressure problems,

pain, inability to walk, shuffle step, etc. etc. etc.

If someone could put some more detailed info on this disorder online or

show the folks reading this where to go to find out I would appreciate

it. We are still in the hotel and they charge $24 an hour for using the

internet. I just felt that this was too profound not to tell everyone.

We have spent over a half a million dollars on hospitalizations,

surgeries, medications and equipment in the past year. All for this. The

neuo's asked why the neurosurgeon was so stupid to even suggest a DBS for

me? He said that it was vast negligence. He said that NO ONE should even

consider a DBS based on symptoms and clinical evaluation alone. MRI's

aren't enough! A F-SOPA PET should be insisted upon and NO physician

should ever do brain surgery for PD disorders of any kind without

one. Said that this F-DOPA PET scan has been available for the public and

covered by insurance companies here at their facility for the past 15

years! They can give DEFENATIVE ACCURATE Diagnosis of ALL PD disorders

including PSP, OPCA, SND, Alzheimers, Epilepsy, stroke,,, etc.

Overwhelmed in NY..... one test to go then we go home.... Message:::::

QUESTION your docs even if they make you feel stupid.... INSIST on this

test.... It will save you time, energy and possibly your health.

By the way, Type I Chiari Malformation is diagnosed through a CT-SPINE

MRI and CSF Flow study! The combination of this and the above could save

your life or at least give you peace that you have been dx correctly.

Talk to ya'll on Wednesday or Thursday!

Hugs,

Deborah AKA Tenacity

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