Go get 'em Tennacity!

[Guest guest]

Hi.

Thanks for your lengthy posting earlier. I know your life has been

the pits, but at least you're getting a grip on what is going on.

By the way, keep on those docs. We all need to be humbled every once

in a while. Hopefully your posting will enhance understanding. I

know his responses did not read all that great to me either.

By the way, are you out now? Never heard - did you ever have that

migraine? You sound like me - when you need to have something - it

doesn't happen :-)

Curious - did the PET show MSA? or does it just rule out other

related diseases? My internist is scheduling me for 2 PET scans, and

some additional MRI testing (including the spine - to look for

tumor). Please pass that info on to , as I'm sure he'll enjoy

it.

Well, just wanted to encourage you in your endeavors. But be

careful. You write like that - and someone is likely to think

there's nothing wrong with you :-)

[Guest guest]

Hi ,

Sorry the earlier post was so long... I just get going and don't stop

sometimes :-) Looks like this one will turn out that way too...

No, I never had the migraine so no lumbar puncture was done. I also did

not have the visual test, the tilt table test, the sweat test or muscle

tests while there. The barium swallow showed that I have a hyietal

(spelling) hernia and gastric reflux. The F-DOPA scan for dopamine in my

brain was normal... ie... no Parkinson's disease. My FDG PET scan for PD+

disorders showed some signal weakness in the mid brain but not any PD+

disorder. My 3D CT scans showed some disk problems but nothing to explain

why my symptoms are so bad. My head to toe MRI's did not show any cysts on

the spine that would cause any CSF flow problems. It did show a type 1

Chiari malformation of 4.5 mm on one side and 3 mm on the other but it did

not show compression. That is why they wanted me to have the spinal tap

with headache.

To answer your question, it is the FDG PET that will accurately show

whether one has a PD+ disorder. I have the data somewhere on it and when I

dig it up, I'll post it. I know that Jan had sent me an email asking the

same question.

What I left with is more along the lines of knowing what I don't have than

being dx with what I do have. The doctors started me on Lamictal which is a

seizure medication that has to be built up in your system by very very small

increases in the dosage every 2 weeks. What I mean by this is that I was

started at 25 mg, 1 per day for 2 weeks and then will go to 50 mg for 2

weeks. Therapeutic dosage is somewhere between 150 and 500 mg per day. I

have a long way to go on that one...lol. They still have me on Neurontin

(another seizure med) and Baclofen (pain med) and very high doses of

antihistamines. (I had 2 reactions in the hospital, one so severe that they

had to start steroids again).

The bottom line is that I do not have PD or a PD+ disorder but my symptoms

are exactly the same as MSA. The doctors said that if it were not for the

PET scans, that they too would be completely certain that this is MSA. My

body is still too " toxic " from the medications that were given me in

January-July for all the problems that I was having to be able to get any

kind of clear cut answer as to what the problem is. For example, my blood

work showed High for neutrophils and low for lymphocytes and high for 3

different things in the red blood cells. But this was not a good clue as to

what was causing anything.

Results from the tests came back with " Almost normal but... " so many times

that I threatened to change my online name from Tenacity wins to Almost

normal but....

What they want to do, is give my body time to detox from all the garbage

used to treat my symptoms. They will continue to increase the Lamictal

while reducing the other medications gradually and see what will happen.

They want to retest in 4 - 6 months.

It is possible that part of my problem is related to scar tissue in the

brain and brain damage from the DBS. It is possible that this is also some

type of seizure disorder and it is possible that it is still Chiari related.

They didn't check my muscles so don't know about that one. I have to work

hard on getting my body back into some kind of fighting mode instead of

victim mode, build up tolerance and reduce the chemical build up and then,

if able to put myself through it, go have the tests run again somewhere

between January and March 2003.

With all said, I sure am glad that I fell into that group of the 10 - 26%

misdiagnosis category!

I also want to thank everyone for their support and calls and cards while

in the hospital for the past 2 weeks. I missed ya'll.

What a PET scan looks like and a very noted MDS's inaccurate dx is posted

on my photo site if you would like to see...

http://community.webshots.com/user/tenacitywins

Hugs and warm fuzzies,

Deborah aka Tenacity

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[Guest guest]

Hi Deborah, Your note to answered most of my questions. Thanks!

I'm sorry that you still have no clear answers after all that you've

been through.

Hugs,

Pam

[Guest guest]

Pam,

It's OK.... the true answers will come after I detox and heal. I just

hope that this helps others on the list know that there are other options

available for finding out what is wrong with them other than autopsy.

One thing to think about is if Dr. Leiberman's statistics are correct...

(referring to my first post) 10% misdiagnosis....(I actually found recent

info that says it is more around 26% misdiagnosis...but anyway)... taking

his numbers... 10% misdiagnosis... that means that everyone has a 1/10

chance of being cured if they would insist on a definitive dx.... either PET

or SPECT scans.

Think about the unnecessary medications, operations, drug trials, loss of

employment, financial and emotional trauma that would be spared if only 10%

of us could get our dx changed. The actual numbers when thinking about this

are alarming.

Think about the support group meetings... look around... count the

people.... then think 1/10 or if you take the numbers that I found, 26% are

correct then approximately 1/4 in the room needent be there and could be on

the road to getting better all for a lousy few hundred dollars difference in

tests.

If the NINDS can be holding clinical trials for neuroprotective agents in

slowing the progression of PD and PD+ disorders by identifying people in the

pre-symptomatic phase of PD as shown in PET scans.... why don't the rest of

us deserve this? They know it is out there.... a definitive way to

diagnosis.... yet it is withheld from us.

I don't know about the rest of you but in my worse day, I would not wish

PD or a PD+ disorder on my enemy much less my friends.

1/10 or 1/4 of those reading this could be on a different path if these

tests was implemented. The others would gain peace of mind. Just something

to think about. It angers me to hear it said that this is just not

necessary. Just look at my dx from Dr. Levesque and then the clinical

results from NY.... one offered death and no hope... the other took death

away and offered hope. I just want others to get well too.

Hugs,

Deborah aka Tenacity

---------------------------------------------------------------------

Hi Deborah, Your note to answered most of my questions. Thanks!

I'm sorry that you still have no clear answers after all that you've

been through.

Hugs,

Pam

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Bill:

I agree that most of the people on this list are dealing with a brain

dysfunction that is incurable. The problem is that it is pretty easy to treat

symptoms with known drugs, and usually, if the drugs work, the diagnosis is

accurate. In Ken's case, all his PD symptoms went away for almost five years

after he started taking Sinemet. It was pretty obvious from that that he did

indeed have Parkinson's, and no scans were necessary. When he developed other

symptoms such as blood pressure deviations, etc., the usual drugs for those

symptoms did their job. But when he developed Dementia, and our Neurologist

said his symptoms were not typical of either Alzheimer's or Parkinson's, that

is when we tried the Aricept with the wonderful success I have often

documented here. BUT, at that time, a PET Scan was discussed and we put it on

the back burner because the medications we were using were working so well.

As you know, Autopsy showed that Ken had DLBD and not SDS, and he had

Parkinson's. If we had had a PET scan, we would have had a more accurate

diagnosis but no better treatment.

Deborah, however, had never had really good typical results from the

drugs they have used, and she has had symptoms that were not really

explainable or easy to treat given the diagnoses she was receiving. I think

it is rather unconscionable to actually operate on a patient's brain without

using a PET Scan first. I have attended workshops showing how useful they can

be in certain cases, and hers is certainly one that just cried out for this.

The DBA surgery alone could have been prevented, and it costs many times as

much as a PET scan. On Hindsight, I do wish we had gone ahead with it for Ken

when it was suggested even though our Insurance would probably not have paid

for it at that time.

Barbara

[Guest guest]

Deborah,

I am not sure exactly what you are saying here, but it seems to me you

are drawing very erroneous conclusions. Most of the " misdiagnoses " are

just the wrong brain disorder PD, MSA, SDS, OPCA, PSP, CBGD, PAF, POTS,

etc. Since none of them are curable at this time, spending

$5000-$10,000 on tests would not really help. Then you take into

account that NO TEST has been proven more than about 83% correct for any

of these disorders and you find the problem that you ran into. You had

a dozen or so tests and they showed a dozen or so problems.

Most people on the list do NOT get the medicines you received, so saying

some people would be better off without medicines is causing extreme

confusion among people who NEED their medicines.

On your list of tests, etc. there is little info on why you got the

tests. I see rigidity and pain mentioned. Did they do a nerve

conduction test? Did you have tremor (tremor is why they do DBS from

what I have read). What other symptoms did you have to justify these tests?

Does your paperwork mention things like extra-pyramidal disorder,

ataxia, dystonia, gait disturbance, cogwheeling or any neurological

problems? Charlotte's paperwork mentioned all of those things but her

MRI showed some atrophy of the whole brain.

Remember that the 26% mentioned is that as much as 26 % of PD patients

may have another incurable brain disorder so none of them are curable as

you suggest. If PD patients stop taking their Sinemet, they may be

immobile within a day. I know of maybe three people over the three

years and hundreds of people on the list who have finally been diagnosed

as Chiari and that does NOT take a Pet scan to diagnose, they diagnosed

my daughter's 4 years ago with a MRI - 30% of the cost of a PET scan.

Shoving everyone into getting a PET scan would cost many millions of

dollars in the USA. That money could be better spent on research to

cure the disorders.

Our support group meetings have people with several types of brain

disorders and ALL need caregiving advice. The comradeship of knowing

you are not alone is good for people with similar symptoms such as gait

disturbance, ataxia, rigidity, dystonia, dysphagia, dysautonomia, etc.

I do NOT understand why you feel so many people could be cured of their

symptoms by a few tests. How do the tests cure you? I am not alone in

asking this as I am getting private letters asking if people should get

tests and operations. I would think that your experience with

operations should convince people to stay away from them for now. From

what I have read, DBS is good for stopping tremor in PD patients, but

not recommended for MSA patients.

I am glad for you that they now say you only have early stage PD instead

of MSA, but please realize many people here actually have PD+ disorders

and I doubt that any of them are going to be cured by going off their

medicines. Yes some may have PD, POTS, PAF, LBD, CBGD or something else

rather than PD or MSA, BUT their doctors are treating the symptoms they

have NOT MSA.

Take care, Bill Werre

======================================

Deborah Setzer wrote:

>Pam,

>

> It's OK.... the true answers will come after I detox and heal. I just

>hope that this helps others on the list know that there are other options

>available for finding out what is wrong with them other than autopsy.

>

> One thing to think about is if Dr. Leiberman's statistics are correct...

>(referring to my first post) 10% misdiagnosis....(I actually found recent

>info that says it is more around 26% misdiagnosis...but anyway)... taking

>his numbers... 10% misdiagnosis... that means that everyone has a 1/10

>chance of being cured if they would insist on a definitive dx.... either PET

>or SPECT scans.

>

> Think about the unnecessary medications, operations, drug trials, loss of

>employment, financial and emotional trauma that would be spared if only 10%

>of us could get our dx changed. The actual numbers when thinking about this

>are alarming.

>

> Think about the support group meetings... look around... count the

>people.... then think 1/10 or if you take the numbers that I found, 26% are

>correct then approximately 1/4 in the room needent be there and could be on

>the road to getting better all for a lousy few hundred dollars difference in

>tests.

>

> If the NINDS can be holding clinical trials for neuroprotective agents in

>slowing the progression of PD and PD+ disorders by identifying people in the

>pre-symptomatic phase of PD as shown in PET scans.... why don't the rest of

>us deserve this? They know it is out there.... a definitive way to

>diagnosis.... yet it is withheld from us.

>

> I don't know about the rest of you but in my worse day, I would not wish

>PD or a PD+ disorder on my enemy much less my friends.

>

> 1/10 or 1/4 of those reading this could be on a different path if these

>tests was implemented. The others would gain peace of mind. Just something

>to think about. It angers me to hear it said that this is just not

>necessary. Just look at my dx from Dr. Levesque and then the clinical

>results from NY.... one offered death and no hope... the other took death

>away and offered hope. I just want others to get well too.

>

>Hugs,

>Deborah aka Tenacity

>

>---------------------------------------------------------------------

>Hi Deborah, Your note to answered most of my questions. Thanks!

>I'm sorry that you still have no clear answers after all that you've

>been through.

>

>Hugs,

>Pam

>

>

>

>_________________________________________________________________

>Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

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

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

I certainly agree with you Bill when you say most of the misdiagnoses are

the wrong similarly incurable brain disorder. We've seen evidence of that

over and over on this forum when people have been so kind to share the

autopsy results of their loved one with us. I think Deborah is concerned

that there might be even one person out there who actually has a curable

disorder and she wants them to know that a PET scan might help them to

detect it. I can certainly understand her concern and wanting to help

others avoid going through what she has in her quest for a diagnosis.

I also understand the uncertainty of this topic worries people and may cause

them to doubt their or their loved ones diagnosis. If we could magically

turn the clock back we might be having this very same discussion about a new

test called an MRI scan. Medical science is indeed progressing... this is

one example of it. Has it progressed enough for this test to be reliable?

.... I certainly don't have the knowledge to say whether it has or not. The

doctors who scanned Deborah in New York seemed to think so.

Should everyone run out and get a PET scan tomorrow?... probably not. But

should they be given the knowledge we have to share about PET scans so they

can decide with their doctors what to do?... absolutely. Deborah is

understandably emotional about this topic, the same way I am about wanting

people to be tested for Sleep Apnea since that is what led to my

mother-in-law's early death and the same way you are about wanting people to

be checked for infections since overlooking this caused Charlotte so much

suffering.

In the end it all boils down to the same thing, none of us are doctors and

even if we were we wouldn't have all the answers. We can only go by our own

experiences and try to share what we've learned with others. Patients and

caregivers together with their doctors make their own choices for tests and

treatments, some of them turn out right and others turn out wrong... but

still we muddle through together.

Hugs,

Pam

[Guest guest]

Deborah and all:

Another thing that PET scans can do is show whether a particular drug

treatment is actually doing what it is supposed to do. I have seen scans of

Schizophrenic patients and PD patients taken both before and after certain

treatments, and they do show that there is or is not a change. As I said

before, on hindsight, I am sorry we didn't go ahead with a PET scan when it

was suggested. Of course, we live right next door to UCI where they do a lot

of them and are researching several diseases with them.

Barbara

[Guest guest]

Thank you Barbara for understanding what I was trying to say.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

--------------------

Bill:

I agree that most of the people on this list are dealing with a

brain

dysfunction that is incurable. The problem is that it is pretty easy to

treat

symptoms with known drugs, and usually, if the drugs work, the diagnosis is

accurate. In Ken's case, all his PD symptoms went away for almost five years

after he started taking Sinemet. It was pretty obvious from that that he did

indeed have Parkinson's, and no scans were necessary. When he developed

other

symptoms such as blood pressure deviations, etc., the usual drugs for those

symptoms did their job. But when he developed Dementia, and our Neurologist

said his symptoms were not typical of either Alzheimer's or Parkinson's,

that

is when we tried the Aricept with the wonderful success I have often

documented here. BUT, at that time, a PET Scan was discussed and we put it

on

the back burner because the medications we were using were working so well.

As you know, Autopsy showed that Ken had DLBD and not SDS, and he had

Parkinson's. If we had had a PET scan, we would have had a more accurate

diagnosis but no better treatment.

Deborah, however, had never had really good typical results from the

drugs they have used, and she has had symptoms that were not really

explainable or easy to treat given the diagnoses she was receiving. I think

it is rather unconscionable to actually operate on a patient's brain without

using a PET Scan first. I have attended workshops showing how useful they

can

be in certain cases, and hers is certainly one that just cried out for this.

The DBA surgery alone could have been prevented, and it costs many times as

much as a PET scan. On Hindsight, I do wish we had gone ahead with it for

Ken

when it was suggested even though our Insurance would probably not have paid

for it at that time.

Barbara

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[Guest guest]

To join in on this topic, I think Barbara may have made the most

relevant

observation which is, if your symptoms just don't seem to be " typical "

of the illness or are not consistent with the symptoms of PD, MSA, etc.,

then maybe you should continue to explore the possibility that the

diagnosis is not correct. But I do agree with Bill, if you have the

typical symptoms and the progression, then the question is probably

which of the currently incurable degenerative disorders do you actually

have, and the only absolute diagnosis a this point in time is post

mortem.

Regards,

Jerry Cash

Re: Go get 'em Tennacity!

Bill:

I agree that most of the people on this list are dealing with a

brain

dysfunction that is incurable. The problem is that it is pretty easy to

treat

symptoms with known drugs, and usually, if the drugs work, the diagnosis

is

accurate. In Ken's case, all his PD symptoms went away for almost five

years

after he started taking Sinemet. It was pretty obvious from that that he

did

indeed have Parkinson's, and no scans were necessary. When he developed

other

symptoms such as blood pressure deviations, etc., the usual drugs for

those

symptoms did their job. But when he developed Dementia, and our

Neurologist

said his symptoms were not typical of either Alzheimer's or Parkinson's,

that

is when we tried the Aricept with the wonderful success I have often

documented here. BUT, at that time, a PET Scan was discussed and we put

it on

the back burner because the medications we were using were working so

well.

As you know, Autopsy showed that Ken had DLBD and not SDS, and he had

Parkinson's. If we had had a PET scan, we would have had a more accurate

diagnosis but no better treatment.

Deborah, however, had never had really good typical results from

the

drugs they have used, and she has had symptoms that were not really

explainable or easy to treat given the diagnoses she was receiving. I

think

it is rather unconscionable to actually operate on a patient's brain

without

using a PET Scan first. I have attended workshops showing how useful

they can

be in certain cases, and hers is certainly one that just cried out for

this.

The DBA surgery alone could have been prevented, and it costs many times

as

much as a PET scan. On Hindsight, I do wish we had gone ahead with it

for Ken

when it was suggested even though our Insurance would probably not have

paid

for it at that time.

Barbara

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