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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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn