Stories

Misdiagnosed for Two Decades, CIDP Patient Vows Not to Quit

March 31, 2017

by Melissa Jenkins [email protected]  (source)

 

When Chris Humby of was misdiagnosed with Multiple Sclerosis (MS) 25 years ago, he thought he was being handed a death sentence. 

As a young father of one child and another one on the way, it was a scary situation for both him and his wife Debbie.

He was told he would be in a wheelchair within the next 10-12 years, and his quality of life was going to drastically change.

“I thought I had MS and it was just slow progressing,” said Humby.
 
It was almost two decades later when a neurologist noticed the signs for MS were not there, although the symptoms were. Additional testing showed he had Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a rare neurological disorder that is progressive, leading to weakness and a decrease in sensory function.

This past October, Humby began a treatment that is supposed to help stop, and maybe even reverse, the effects of the disease. For two days he gets intravenous immunoglobulin (IVIg) therapy. It contains plasma from human blood and helps boost a person’s immune system.

Humby has had three treatments, and will continue to have them for the rest of his life. The schedule and amount of treatments are still being figured out for him, but the frequency and strength of the IVIg can change.

 
“I’m hoping this treatment will keep me at best status quo,” he said. “I’m content with status quo.”
 
 

Diagnosis doesn’t control life

For the first two years after Humby was diagnosed with MS, he stopped doing things that he loved. He didn’t see the point if he wouldn’t be able to do the same things in a few years.

But that didn’t last.
 
 “One day I just said, ‘I can’t live with what if, so I have to start living now,’” Humby said.
 
 He is well-known in his community.
 
 He is deputy fire chief, a sea cadet officer, runs a photography business, is part of the local cat rescue group and is a paramedic. It’s not uncommon to see him attend different events and activities, offering his services and support when he can.

What is CIDP?

 
 
CIDP happens in less than two out of every 100,000 people. The symptoms mimic MS and are in the same line of diseases as Guillain Barre.
 
The National Institute of Neurological Disorders and Stroke explains the treatment as, “a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves.”
 
 
 
 
 

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