Re: Nerve biopsys in those with SBI's

[Guest guest]

I have a hard time believing that there have only been 47 SBI women

who had sural nerve biopsies there in Houston at Baylor. In 1992, when

I first became ill, I was seen at Baylor, in Neurology, by Dr.

Ashizawa. He and Dr. Patten were seeing patients from all over the

world who came, because there was no one else who would take an

interest in these cases.

There was a protocol of sorts then for testing for SBI women which was

done while at the day surgery unit: probably about $10,000-15,000

worth of tests. It required a sural nerve biopsy, muscle biopsy, an

ultrasound of the heart and chest, a spinal tap and in my case, 24

vials of blood were drawn for various tests... I am drawing a blank on

the rest of the required testing. All of this was done in 1992.

There were many of the women there in Baylor's neurology department..

You could just about tell who was an implant patient by observing the

faces of anxious women in the halls, many of whom were walking along

dragging their IV poles along with them. (IVIGG's) Getting an

appointment was a nightmare of waiting and waiting for return calls

from harried secretaries.

Dr. Ashizawa went on a sabbatical leave rather suddenly. Some time

after that, Patten retired, if you can call it that, (Some of you who

have been around this for a while, probably know more about the real

story behind his decision to quit practicing.) Sadly, these were

pretty much the only two doctors who really had seen a number of the

women with neuro problems.

The biopsies that were done during my time there were no where near

the date of this 1999 abstract. I don't know what Dr. Vogel's interest

in this stems from, unless he is reviewing slides of these biopsies

done back in the early 90's, when women were beating down the doors of

Baylor trying to get help...

My own biopsy results revealed 39% demyelination. Perhaps I would fit

in the category " alterations of uncertain clinical significance. " It

does not seem to impress any one...

I do know at least 5 people who had this biopsy done. Considering the

fact that Baylor acted like they did not want to even handle these

cases after the above fiasco, I wonder where the patients described in

this abstract even came from. I do not believe he was the pathologist

who read my biopsy slides. The name that comes to mind is a Baylor

Pathologist named Harati...

Cathie

[Guest guest]

Cathie ~

Girl, great story of truth ! There were

so many fish stories back then.

There was so much fabrication back then.

Well, still is...I had 3 doctors recommend the

IVGG treatment for me, but the ins company

refused to pay, I appealed it twice, but no

luck. Now they routinely do it for neuropathy,

well, they did last time I looked it up....

They wanted to do a nerve biopsy on me

after that, I was seeing Dr Werner, friend of

Pattons, he was a lovely man, and was so

very kind to me.

Anyway, I turned down the biopsys, wouldnt

have done any good, and I had already had

4 or 5 surgeries removing siliconomas and

other various debris. I was tired of being

a pin cushion at that point, and nothing was

helping, even the steroids stopped helping.

I thought it was rather odd that the doctor

in town didnt want any of my blood or anything

for his study on affects of silicone.....hum....

That was really just confirmation they didnt

want the truth !

Great hearing from you again !

How are you feeling these days ? ?

Hugs

Dede

**************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)