Deborah re Almost normal

[Guest guest]

Hi Deborah.

I can relate.

My test results always come back with normal things on them - but

there are also always plenty of abnormalities.

Last night I went ahead and finally linked to the Vanderbilt link for

PAF. Sure enough seems I have the test results to indicate that one -

from Mayo - yet no Dx as such from Mayo. Perhaps they felt " Limited

Autonomic Neuropathy " was sufficient.

They also didn't note what the neuro told me - that I have " Anemia of

Chronic Disease - but we don't know what the chronic disease is " :-)

Story of my life for the past year (plus - guess it's actually going

on 2 years :-)

I also noted many other abnormalities in my results, as did my

internist when she read them. I have had the typical autonomic

tests, and they showed significant abnormalities - so at least the

docs know there is something wrong.

Perhaps the PET scans upcoming will tell me whether it is PD, PD+ or

something else.

I'm also to have the spine MRI. In fact, I was suppose to have

already had all 3 of these - but it appears my internist is doing her

usual procrastination bit. But, at least she works with me, and

knows there is something wrong (she lost a patient with identical

symptoms to mine a few years back - in that case - as in mine - the

local medical community seemed to think that - even though there was

compelling medical results to the contrary - it was " all in her

head " . My internist has told me she'd love to be able to talk to

that patient again, but she can't.)

Did ever get my email? The one Eurico recommended I send on?

Well, just wanted to thank you for your persistence and your

willingness to go into detail on what is going on.

Catcha later.

> 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

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com