Mike Orzek, of Linwood, spent two years battling problems with his vision, hearing, ability to walk and use his hands. In spite of multiple consultations with specialists and visits to emergency rooms, no one could figure out what was wrong.
In desperation, his wife Beth made an appointment at the Mayo Clinic in Rochester, Minn.
After a trip there in late 2010, the couple finally had a diagnosis: Orzek had a rare blood disorder called POEMS - an acronym of long words that describes what happens when a growth in the body, in Orzek's case on his left femur, causes blood plasma cells to grow out of control.
It's related to the cancer called multiple myeloma, but isn't a cancer, he said.
"It doesn't produce cancer cells, but produces blood plasma cells. It's a type of cell naturally occurring in the body, but it produces them in such excess, they start to interfere with all types of organs," said the self-employed electrical engineer, who works as a consultant at the Federal Aviation Admin-istration.
However, it is treated with radiation, chemotherapy and stem cell transplants like a cancer, he added.
The main symptom of the disease, and the first to show up, is usually numbness in the lower legs called polyneuropathy.
But in Orzek's case that wasn't the first symptom, he said.
Instead, adrenal insufficiency, vision issues, fatigue and nausea showed up first.
That may have contributed to his being misdiagnosed with other blood and tumor disorders, and infections.
Orzek has since had radiation treatments that kept the disease in check for a while, then suffered a setback when the cells had invaded his bone marrow, causing it to make too many blood plasma cells.
He had a stem cell transplant in August, from which he is still recovering.
Orzek, who was a Little League coach for years, hasn't worked steadily in months, he said.
He is covered by insurance through his wife's job, as a social worker in the Fernwood Middle School in Egg Harbor Township, and is grateful for the coverage, he said.
Still, transportation costs to Minnesota and Philadelphia have been high, and the family has had to get by with one paycheck and disability payments, he said.
So friends have stepped up to help. Susan Thompson, of Linwood, got the ball rolling on a benefit to help him pay some bills.
"Mike has always been there to help with coaching our kids when help was needed," said friend Carolyn George, of Egg Harbor Township. "We can all return the favor by supporting Mike and his family."
Orzek has two children, Maria, 15, a sophomore at Mainland Regional High School; and Ian, 13, an eighth grader at Belhaven Middle School in Linwood.
Orzek hopes to be back to work after Thanksgiving, he said.
Contact Michelle Brunetti Post:
If you go
Help Mike Fight POEMS benefit, noon to 3 p.m. Oct. 21 at Clancy's by the Bay, 101 E. Maryland Ave., Somers Point. Tickets $20 at the door or ahead contact Carolyn George at 609-214-9234. Food, music, cash bar, door prizes and raffle.