HOLLY:
Diagnosed in April 2004,I was 27 yrs old.
numbness in left arm and hand.
Had an ultrasound done a few weeks later, docs found three bloodclots, two in arm and one in the internal jugular vein in my
neck.
Immediately sent to ST.Lukes Hospital in Houston, CT scan was performed about 2 a.m. that morning. very grueling. they came
in the next morning...told me i had non-hodgkins lyphoma cancer.( my mother is a survivor of this). they assumed i had the same,
it looked like it in the scan.
they did an emergency biopsy, going through my chest wall above my left breast yet righ under my collar bone.
i was in surgery for more than 5 hours. they kept cutting samples and running them to the lab, couldnt get an accurate diagnosis.
st.lukes came up with the FM diagnosis, yet i still was not sure. so i had my biopsys sent to MD ANDERSON cancer center in
Houston and Mayo Clinic in Arizona. They all agreed it was FM.
After about 7 months of me just dealing wiht the symptoms( as my first specialist said to do) I developed SVC Syndrome(
superior vena cava)....I began to become dizzy at the slightest movement of my head...couldnt bend over to do laundry, pick up my
baby girl. over a period of weeks it literaly put me in the bed. all i could do was lay down. then i got fed up!!!!
I went to my doc, he said there was NOTHING he could do for either...the FM or the SVC. I had enough and decided to fight for my
life. Thats when i spent almost 90% of my days on the phone and computer.
I found Dr. Loyd at Vanderbilt through the support group on yahoo. I contacted him for weeks. He finally responded to a
letter.....agreed to look at my films ( free of charge, which was very very nice!) I overnighted them to him and we emailed for awhile.
I discovered some articles about treatment ( CONTROVERSIAL) and presented them to my doctor. He was totally against it, I then
fired him and went to his boss, Dr. Martynowicz, Chief Of PUlmonary. He was hesitant at first but agreed to start me on the
treatment after doing his own research.
I dont know if youve read anyhting about the treatment or even started it but i began it about 17 months ago. It contains the
following: Prednisone - a steroid;Tamoxifen-breat cancer drug;other meds to counteract the horrible effects of these two.
However I did start the treatment sooner, but got off AMA................Dr.Marty was not happy. The steroids were packing on the
pounds and altering my personalilty, it was EVIL!!!!! I was miserable and thought i was goign to be okay.
I was wrong....alomost dead wrong. about 3 months later i ended up back at Stlukes for major chest pain, shallow breathing and
pain. Turns out both lungs had completely collapsed and one was filled with fluid. They had to drain it,pump them up and put me
back on the striods....IV WISE THIS TIME, IN A VERY HIGH DOSE. By the awesome grace of God..... my body accepted the
treatment within 3 days or so.the docs told me and my family to prepare for the worse.
The doctors said it was a miracle, literally a miracle. they had never seen someone recover so quickly. It is rare that you hear any
doctor say anythings a miracle.I am a Christian, always have been, yet this roller coaster ride has made me much stronger in my
faith. I do believe it was a miracle.
I also had an elective surgery in 2005. A left lung thorcotomy...which is major surgery equvilent to open heart surgery...excpet they
go through your back, breaking ribs and destroying nerves. I chose that route...i already have one scar on my chest, this one is
hidden excpet in a bathing suit. I was not convinved it was FM......so I let thm open me up again to get a better feel and look at
things. to my dismay it was still FM.
so, I started the treatment once again a dn my doc wants me on for 2 solid years, only a few more months to go!!!!!!!!