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

[Guest guest]

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

[Guest guest]

Deborah,

Wow! Don't know what else to say.

The next question is what does all of this mean in relation to your

condition at this point. It would seem since you were miss dx'ed

your chiari has progressed rapidly

already. Can't wait until you are home and can answer some of the

100's of responses you will be getting to your email.

God be with you on your trip home'

Best Wishes to you and

Darlene

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 TenacityIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Hi all.

Among my blessings last week, was contact with an individual that I

didn't know. I had accidentally sent him info regarding Chiari. He

asked for more info from me regarding symptoms. I then sent him pics

of my MRIs as per his request. He then told me the specific things

he saw there, and gave me excellent info on where to send the pics

for review by an Arnold Chiari Malformation (ACM) expert. If anyone

does send off their pics, please make sure it's a good doc. I have

the names of some - and am sure that this guy would be more than

happy to help any of us for whom this is considered. There is a good

site @ www.pressenter.com/~wacma

One final word... while there are indeed many children diagnosed

with this, there are also many adults with it, so don't be misled by

some of the pics or stories. It can be an adult thing as well. In

addition - I have found reports that even symptoms of Fibromyalgia

have been alleviated by surgical correction of this problem. Would

be nice if this answered my and others' problems. Only one way to

find out. But again, it was emphasized to me - make sure the doc is

good. Feel free to email me for input regarding docs. I have a list

of those who have supposedly been proven trustworthy. There are bad

ones out there who are supposedly ACM experts too - just as with any

area of specialty.

Pablito - aka Pula aka simply - :-)

>

> Deborah,

> Wow! Don't know what else to say.

> The next question is what does all of this mean in relation to your

> condition at this point. It would seem since you were miss dx'ed

> your chiari has progressed rapidly

> already. Can't wait until you are home and can answer some of the

> 100's of responses you will be getting to your email.

> God be with you on your trip home'

> Best Wishes to you and

> Darlene

>

> 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

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe@y...

>

>

>

>

>