For Jake*, a musician who makes his living playing violin in Broadway shows, recording sessions and classical orchestras, the symptoms of chronic inflammatory demyelinating neuropathy (CIDP) started slowly.
“I started experiencing very subtle tingling in my pinky in my right hand,” Jake says. “At the time, I didn’t think too much of it … If it weren’t for the fact that I’m a violinist, I wouldn’t have paid much attention.”
The tingling in Jake’s hands was the first sign of damage to his peripheral nerves. As CIDP develops, the fatty myelin covering that sheaths the nerves begins to degenerate. This damage impairs muscular response and reflexes, causing weakness, fatigue and loss of motor skills. CIDP is often called the “chronic” version of Guillain-Barré syndrome (GBS), an “acute,” or sudden-onset, disease with similar symptoms.
As his symptoms got worse, Jake went to see his primary care doctor, who diagnosed him with carpal tunnel. Jake began wearing a splint to stabilize his wrist at night. Sometimes the tingling was worse than other times. “It was one of those things that would come and go,” he remembers. “One thing I did notice was, every time I got sick, the symptoms were worse.”
But he didn’t connect his lower immune function with the tingling in his hands and wrists.
Jake’s CIDP Diagnosis
Nearly three years after experiencing the first tingling in his hands, Jake visited a chiropractor to find a solution for his symptoms—which had worsened, and now included numbness and weakness. “At that point, it was more than just tingling,” he says. The chiropractor sent him to a neurologist, who performed an EMG test to measure muscle and nerve response.
“The EMG showed that it wasn’t just one nerve involved,” Jake remembers. “It was systemic. The issues were in my extremities.”
But Jake’s doctor wasn’t completely convinced that his patient had CIDP. “With CIDP, generally, when you show signs of it, it’s significant weakness,” Jake explains. “I didn’t have that, or a lot of motor issues.”
That’s not to mention that CIDP is extremely rare. According to GBS/CIDP Foundation International, for every 1 million people, between 1.4 and 3.6 cases are diagnosed.
Jake was referred to another neurologist—the neurology department head of a major New York City hospital. “He came out and said, ‘You have CIDP,’” Jake says. “That was the first time it was ever mentioned to me.”
Starting IVIg Therapy
Because Jake was mostly symptom-free, he didn’t begin treatment right away, but continued to get regular EMGs every few months. “Then, it started to interfere with my playing,” he says. His hands became weaker, until it was difficult to twist the cap off a bottle of water.
Jake’s doctor started him on intravenous immunoglobulin (IVIg) therapy, beginning with a “loading dose” of five consecutive days of infusion. “Sure enough, this stuff was amazing,” Jake says. “My symptoms cleared up. It was like having gloves pulled off my hands. Maybe a day or two after my last day—the fifth day—everything just cleared up.”
Now, Jake receives IVIg every four weeks. “The actual process takes about four hours,” he says. “The drip starts very slowly, and increases every half-hour. You’re more vulnerable to headaches and clotting [if the drip starts quickly].” He also makes sure to hydrate before, during and after his therapy.
He’s also experimenting with changing his diet in an attempt to reduce inflammation. “I’m a firm believer that the food we put in our body does play a part in disease,” he says.
How Does IVIg Work?
IVIg therapy works in a variety of ways. Though immunoglobulin replacement therapy has been used for nearly 50 years, it’s just beginning to be better understood in the last decade. The overall effect of the therapy is to reduce inflammation and fight harmful immune responses that cause some of the body’s cells to turn on each other.
Jake’s MedPro Rx Experience
At first, Jake went to a hospital to receive his regular monthly IVIg infusions. “There was a lot more red tape involved,” he says. “It was a lot more complicated back in those days.”
When Jake’s neurologist set up an infusion treatment suite in his office, Jake began receiving therapy through MedPro Rx. “It’s really been so much easier,” he says. “I got a great guy, who is the rep from MedPro Rx, who makes my life so much easier. If there’s any issue with insurance, he clears it up … It’s been a godsend.”
Jake’s care team includes his personal service representative, David; the nurse who administers his regular treatment; and Annie, who set up his initial insurance coverage. “Annie took care of the initial insurance information and getting pre-approved,” he says. “She was so on top of it, and I was so impressed.”
Though Jake is grateful that his regular therapy allows him to continue playing violin, he’s still hoping that one day, he will no longer need IVIg therapy.
“My ultimate goal is to not have to have these treatments,” he says. “As lucky as I am that it works, it is an inconvenience. And that’s all it is at this point.”
In the meantime, his wife may be the only person who notices the effects of his CIDP, he says. “Truth be told, I think I’m still playing as well as ever. It has not hindered my ability to play in the slightest.”
*Name has been changed to protect patient privacy.