People just like you share their CIDP experiences from symptoms to diagnosis

AGE: 54
"Everything felt heavy—my arms felt heavy, my legs felt heavy."
SYMPTOMS:
  • Numbness in feet, legs, and arms
  • Weak
  • Tired

"My feet were kind of numb and the numbness kept growing. I went to my regular doctor and told him that I was tired all the way to my soul. I was so tired. Everything felt heavy—my arms felt heavy, my legs felt heavy and by the time I went to see him, I had to get a wheelchair to get into his office. I couldn't walk. After that, I went and saw a neurologist and he pretty much had it pegged right off the bat. I had a spinal tap—he checked my spinal fluid and within 30 or 40 minutes we had a complete diagnosis of CIDP."

AGE: 55
"To get my diagnosis, it took 6 years."
SYMPTOMS:
  • Lost control of feet
  • Weak
  • Clumsy
  • Difficulty walking

"It first started when I was on vacation—my foot started to plop. So when I came home, I saw a neurologist and he said he didn't know what it was but told me it shouldn't get any worse. It got worse so I went and saw my primary doctor and she originally thought it was from my diabetes.

"I started getting clumsy so I knew it wasn't diabetes or anything like that so I went back to my neurologist and he said I had CMT, which is a genetic issue, but none of my family has that.

"So he sent me to a therapist to help me strengthen my muscles. She looked at my legs and said, "you don't have CMT—I don't know what you have, but it's not CMT." So she recommended me to a different neurologist. They looked at me and said the same thing, "you don't have CMT." They did a complete blood screening and they still couldn't figure it out. They sent me to another specialist and he did a physical, an EMG, and nerve conduction study. After all of that they figured out that it was CIDP.

"He told me that the nerves below my knees were too far gone and not to expect a lot of that to repair once I started treatment. CIDP took the strength out of my hands and I wear braces on my legs.

"To get to my diagnosis, it took 6 years. I let my doctors tell me I had something I didn't for too long. I got an award at a corporate meeting and I almost fell walking up to the stage, so I wanted to figure this out."

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Charcot-Marie-Tooth Disease, or CMT, is a group of inherited disorders that affect the peripheral nerves, which are the nerves outside the brain and spinal cord.

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