Hi Marty:
Well, you have just met your clone! I also
have Empty Sella Syndrome - I was diagnosed in 2000 after a 12-year search for
what was wrong. I also have fibromyalgia, osteoporosis, heart valve
disease, and GERD.
Much of what you are experiencing is probably due
to the fact that your pituitary is gradually losing tissue because of the
infiltration of spinal fluid into the sella turcica. That is what happens
when you have Empty Sella Syndrome. I have had or still have many of the
symptoms you have including the exhaustion, sleepiness, memory problems, and
ringing in the ears.
I happened to read a medical journal article
about Empty Sella Syndrome in 2000 and I wrote to the doctor who had
written the article. I was shocked when he called me on the phone and
asked me to go to Boston to see him. He was conducting a study of people
who were potentially hypopituitary and so he put me in that study. I had
to go to Boston to Mass. General every two weeks for about three months to get
tests. It turned out that I was deficient to at least some degree on all
the endocrine hormone tests so I had to start on replacement hormones.
This is what you should be looking into if you haven't already. It takes a
long time to get the hormones adjusted properly so the sooner you start on them
the better off you'll be.
Regards,
Kathryn
----- Original Message -----
Sent: Friday, January 09, 2004 6:21
PM
Subject: My pituitary issue and
story
My
pituitary issue and story
Reply
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| From: Marty8582 |
Hello everyone!
It is a pleasure
to become such an active group and thank you Minnie for asking
me to join!
My story begins with an empty sella syndrome
diagnosis made in early 2001. Soon thereafter, I was also told
that my MRI results were a concern because of something found
from the MRI that could be an "early onset of Alzheimers!" What
a nightmare for a 47 year old! We sought medical advice locally,
then UCLA, then Schripps Medical and then Mayo Clinic finally in
May 2003 to finally be put us at "ease" that it wasn't
"Alzheimers".
However, I still have many issues with short
term memory loss that has been an issue for nearly 6 years. In
May 2003 I was diagnosed with chronic fatigue syndrome, deviated
septum, "partial" empty sella syndrome, sleep disorder (later
found to be sleep apnea in June 2003). Had two surgeries for
pre-cancerous tissue being removed on my stomach in May and June
of 2003. Had deviated septum surgery also to remove a bone spur
behind the nostrils that were problematic for me to get
sufficient oxygen flow. That surgery was done in November 2003
and has been successful!! I also sleep nightly with CPAP for the
sleep apnea problem. I have been disoriented, forgetful to the
point I wasn't sure which lane I should go into while driving
well over a year ago and prior to that where I was going, why I
was driving and where I was for a period of a few moments. I can
no longer drive due to those issues and luckily never had any
traffic accidents! I still experience headaches, blurred vision
at times, pain behind my eyes, pressure in my head, extreme
weakness, exhaustion, I want to sleep alot, sometimes shock like
feelings/like a short circuiting feeling within my body. Once
had double vision for a short period of time. I sometimes lack
focus and attention span to complete projects (even small ones)
successfully. Have also had ringing in ears on occasion. Anyone
out there with empty sella syndrome please contact me as am
anxious to connect to compare situation and understand what is
ahead of us. Any known sites to gain information on clinical
trials as well would be appreciated. Please contact. Thank
you!! | |
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