Saturday, June 20, 2015

The Diagnosis (CIDP)

This is my journey to beat CIDP with a stem cell transplant. I will be in Chicago for six weeks, a combination of inpatient and outpatient to stop progression of my disease.

First, a little background on my diagnosis:

What is CIDP?

CIDP is a chronic inflammatory disease that attacks the peripheral nervous system. It is sometimes referred to as a "cousin of MS". MS attacks the central nervous system, creating lesions on the spine and brain. Whereas CIDP attacks the nerve lining (myelin) of the peripheral nerves. Symptoms vary by individual in both type and severity. Some can walk unassisted, some with an aid (cane/walker) and some are wheelchair bound.

My symptoms and treatment

Symptoms began in 2012 all of which were dismissed by doctors. In 2013 further tests and physical therapy were not of much help. Finally in 2014, with the right neurologist, I was properly diagnosed and began treatment ASAP.

With my bi-monthly IVIG treatments I am able to walk unassisted for most of the time (albeit with a goofy limb). Although "Creedence" my cane comes out on occasion. My symptoms include; severe nerve pain; chronic fatigue; numbness in my hands, forearms, feet, lower legs; muscle spams and tremors in my hands and head.

My treatment plan is IVIG infusions (every two weeks) as well as daily doses of Prednisone (steroid for inflammation) and Gabapentin (nerve pain). The infusions have been rough the last few months, causing phlebitis (painful inflammation of the veins),  migraine headaches ad severe fatigue. Without my infusions i am numb from the hips down and have trouble with balance and walking due to an inability to feel my feet. In addition I lose all feeling and strength in my hands, leaving them fairly useless.

What is IVIG?

Intravenous (IV) Immunoglobulins (IG). those who donate blood plasma donate my medicine. One dose can have anywhere from 1,000-10,000 donors of plasma. Thank you blood donors!! There are two theories on how it works: a) the good IG in the plasma, attack the bad ones, which delays attack b) that the good ones go in and distract the bad ones from attacking me. Either way, it certain does stabilize my symptoms and I am grateful for donors.

In recent months I've had issue with treatment due to phlebitis (vein inflammation) which is very painful. Swelling and bruising of my hands and wrists has become a norm anymore. In addition there is the severe fatigue and migraines that accompany IVIG. 

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