What is CIDP?

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) WHAT ARE THE

is a rare disorder of the peripheral nerves. It is characterized by a SYMPTOMS OF CIDP?
gradually increasing sensory loss and weakness associated with
loss of one’s reflexes. • Tingling of the arms and legs
• Gradual weakness in the arms
CIDP is caused when the myelin (the covering of the nerves) is and legs
damaged. This damage can start at any age. Men tend to suffer • Loss of reflexes
from CIDP more than women. • Loss of balance and ultimately
the ability to walk
If left untreated, almost a third of CIDP patients will progress • Loss of feeling in the arms
towards wheelchair dependency. With early diagnosis and and legs, often noticed by the
treatment, however, patients can avoid a significant amount of inability to feel a pin prick
disability.

CAUSES OF CIDP HOW IS CIDP TREATED?

The cause of CIDP is not yet clear. However, the leading theory • Corticosteroids, which
regarding CIDP claims that the body perceives myelin as a foreign often improve strength, are
object and attacks it. By the body attacking myelin, it leaves the conveniently taken by mouth and
nervous system unprotected and unable to communicate with are inexpensive. However, side
the brain. effects can limit long-term usage.
• High-Dose Intravenous
HOW IS CIDP DIAGNOSED? Immunoglobin (IVIG), containing
CIDP is diagnosed based on patient symptoms. Those symptoms natural antibodies from healthy
include numbness, tingling and pain, foot drop, walking difficulty, donors. It is the only drug
and loss of reflexes. There are also tests that can be used to approved by the FDA, Canada,
diagnose CIDP such as EMG, nerve conducting, spinal fluid and the EU for treating CIDP.
analysis, and blood and urine screens. IVIG is administered through
a vein over several hours. It
can also be given under the
Read Fredrick’s CIDP skin (subcutaneously), which
is referred to as subcutaneous
story on the next page.
immunoglobulin (SCIg).
• Plasma Exchange, which entails
removing some of the patient’s
blood and then returning the
cells to the body without the
liquid plasma; this can work
by removing some harmful
antibodies within the plasma.
Although effective in some
patients, this is less commonly
used than the other two
treatments.
Fredrick’s CIDP story
In May of 2013, we spent a glorious week walking all over Philadelphia and adjacent areas.
Occasionally at night I felt a stabbing ice-pick-type of pain in my back, which was only momentary,
so I ignored it. Fortunately, my wife did not ignore it. Without my knowledge, she made me an
appointment in the Physical Therapy area of the clinic we frequent.

My first PT session, the middle of June, was uneventful with various exercises, some involving standing
on my toes. All were accomplished without difficulty. I went home, did my daily exercises, and returned to
PT three days later. However, this time when I was asked to stand on my toes, my heals would not move
off the floor. My therapist became alarmed and immediately had me schedule an appointment with a
Neurologist.

By the end of June, I had progressed from walking unassisted, to a cane, then to a walker, finally in a
wheelchair. My legs were becoming weaker and weaker by the day. I started my initial series of IVIG
Infusions the first week of July 2013.

My Neurologist thought I had ALS but sent me to USC for additional tests. At USC I was diagnosed with
CIDP and started on a three-week cycle of IVIG, with Physical Therapy between visits. In August I traded
in my wheelchair for a walker. In September I moved up to a cane, and I got rid of the cane in October.

I was quite fortunate to have been diagnosed early in the process. The IVIG Infusions are a miracle
for me. I have experienced no side effects, and at one time the interval between Infusions was eight
weeks. (However, when we tried to reduce the amount of IVIG, I did experience a minor setback, and am
currently on a four-week cycle between infusions.)

Except for afternoon fatigue and some ankle weakness, which results in occasional minor foot slap when
I walk, I feel I can do anything that is considered normal for a 78-year-old. If you are just starting your
journey and are fearful of the future, know that I was, too. After turning in my wheelchair and walking
again, I consider my minor limitations not even worth discussing. I am now five years and three months
with CIDP. Life is good, and the future is bright. I wish anyone with CIDP the same success I have had.

Fredrick P. Shell
IVIG patient

Support the Neuropathy Action Foundation • Become an advocate • Learn more at NeuropathyAction.org