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Hi Everyone:

I just want to say that I appreciate the replies that I have gotten from many
of you on this list with regards to my frustration in finding a good doctor
or doctors who can help or at least refer to someone who has specialty in the
area of autoimmune disorders.

It has been a horrific battle for me to get help with my medical issues. This
post may be a bit different than usual but I would appreciate you letting me
air my experience with intent to find a way to go public with all of this.

I have been a very sick Celiac since Nov 1996. I was probably a subtle Celiac
since a teenager. Since 1996, I had a hole in my heart which was repaired
with a device eliminating open heart surgery, a fairly large thyroid goiter
of the right side removed along with a hysterectomy with an endometriosis,
fibroid tumors diagnosis. Now, realistically, I do not cultivate the activity
of running to doctors offices and going under the knife for the sheer joy of
it. However, these things appeared and had to be dealt with. They all gave me
symptoms and had physical signs that were obvious to ultrasounds, scans,
echos and etc (luckily). Then, I am diagnosed with Celiac disease in 1999
after three years of running from doctor to doctor telling them that when I
get eat, I get sick and stools are slimy, odorous, diarrhea like and plenty
in great amounts along with weakness, out of breath when climbing stairs, and
anemia which kept me debilitated. These doctors, which were many from
different disciplines, said that the problems were well in the head. If I
could get a prescription for Paxil on each visit, I would have a stock pile
for years. Finally, one doctor who I had to pay dearly for out of my pocket
gave me the Celiac diagnosis.  I am on the gluten free diet. I do have
residual issues from before the diagnosis. Is this all in my head, or is it
possible that something else is going on when I feel it in parts of my body?
I am being sarcastic here. But, the law of averages says that if a person
does not feel good enough to function fully, something else is wrong. Yet, I
have not been able to get doctors to take me seriously. I have written down
what is going on, drawn the figure of a human body outlining areas where
symptoms are occurring. They look at and say oh this good. Yet I walk out the
door with empty. I must say that Dr Joe Murray was excellent in taking care
of me but his specialty is only in Celiac.

Guys, I am at the end of my rope here. I need to help my husband who had a
brain injury resulting from a fall while installing a satellite receiver
(part of our business) in December. He sustained a subdural hematoma which
put him in the hospital for four days. He was trying to advocate for me all
along but always struggled to do so. We learned that he had another huge fall
at two years old and now in Dec which resulted in brain damage to a part of
his brain. He will be following up for testing soon. All the time, I thought
he did not care to advocate. The truth is, he could not.

    There is too much on the plate. You would think that doctors would look
at patients when they come in as if visualizing that they have other things
in life rather than running from doctor to doctor. Or, maybe that patient is
at the end of his/her rope with other problems. I am not talking about
myself. I am speaking of others who have other issues in their personal life
while trying to get a diagnosis for themselves or family members.

Too bad the system is the way it is.

Lisa