Story: It Took 12 Doctors To Solve The Mystery of My Tingling Fingers!

My fingertips started tingling like they were waking from a deep sleep. The sensation, a slight pins and needles feeling, wasn’t painful but persistent enough that I knew it meant something.

I didn’t have a doctor so I picked one off my insurance provider’s website and went to see her. She spent five minutes with me before referring me to a neurologist, who gave me 15 minutes of his time and attention.

The neurologist ordered some expensive tests and sent me on my way. A few days later, when he had the test results, he called me at home to deliver the news. No small talk, no comforting, and no questions. He led with a bold declaration, “multiple sclerosis,” and added that if I wanted to talk about it I could come see him.

He gave me life-changing news as if it were nothing. My body; however, knew otherwise. The tingling, once subtle and contained, quickly gained volume and size until it was a full-body, full-throttle experience.

I wanted to learn more so I went to his office. He called me Jody and I called him Doctor. He wore a crisp lab coat, while I tried not to cry. To him there wasn’t much to talk about. I only had one choice to make and that was the choice between four similar drug protocols.

‘More of an Art Than a Science’

I went home, cried, panicked, talked to friends, and cried some more. Eventually, days later, I started to remember things I once knew. I remembered that people often seek second opinions and that a white coat doesn’t make a man infallible.

In medicine, like the rest of life, mistakes are not impossible. Studies show that as many as 20 percent of all diagnoses are, in fact, misdiagnoses. And multiple sclerosis presents specific challenges. The disease manifests in dozens of different ways and there is no definitive test. Experts I later spoke to told me that MS is a clinical diagnosis — meaning the doctor must spend time examining and interviewing the patient — and more of an art than a science.

At first I thought my only choice was to take one of the drug options presented to me. I started researching the drugs and what I learned scared me. The odds of them helping — about one in three — were smaller than the odds of them hurting. The list of potential and unwanted effects included headaches, nausea, and liver failure.

Terrified, I found another doctor for a second, third, and then a fourth opinion. By the end of my journey I had seen 12 different doctors. As I went from one to another and another, touring the American medical landscape, I was told I had nutritional deficiencies, heavy metal toxicity, Lyme disease, and depression. It didn’t seem possible that I had all these things at once.

The tingling never grew worse and no new symptoms appeared. I let go of my panic bit by bit. I collected information in pieces, a little here and a little there. I was on a treasure hunt, gathering the clues that would explain the tingling, rule out MS, and give me back my perfect health.

Navigating the Doctor-Patient Divide

As I learned about the human body, I also learned about doctors. Some, it seemed, preferred to talk about test results than talk to or about me. Others, like the first neurologist, didn’t mention non-prescription options.

Fortunately though, every conversation was different. During some of these conversations, the rigid doctor-patient divide fell away and I felt a human connection. In the best conversations, there were two adults in the room who respected on another. One, the doctor, had a wealth of knowledge about bodies in general and the other, me, had a wealth of information about one specific body: mine.

In these conversations, each of us could ask and answer questions, confident that the other had something valuable to contribute. Together, we could start to see a more complete picture of what was happening to create the tingling sensation.

I traveled the country talking to doctors and ultimately, I found two who were nearby and whom I could trust. One is an osteopath who is well-versed in systems thinking and the other is a physician who also trained in ayurvedic medicine, a holistic system of healing.

With each of these doctors, I was able to relax and learn. Together, we devised a plan which included an elimination diet. I’d been tested and was told I didn’t have celiac disease but when I avoided gluten for several weeks and reintroduced it, my body responded poorly. I have what’s officially and awkwardly called non-celiac gluten sensitivity. The tingling, which the first doctor believed to be a sign of MS, is a fairly common symptom of gluten sensitivity.

I stopped eating grain-based protein and my doctors coached me to breathe more, stress less, and exercise differently. I changed my diet and my lifestyle, and I healed.

I wouldn’t suggest my path through a dozen doctors is the right one for anyone but me. It was a very long year. At the same time, the relationship you have with your doctor is so critical to healing. I believe that each of us on the patient side of the divide can decide what type of relationship we want and we can work on finding it.

I like to think that everyone can heal but I don’t know if that’s true. I know; however, that I started to heal in small and powerful ways when I started engaging in the conversation with my doctors and making choices that worked better for my body.

Jody Berger is the author of Misdiagnosed: One Woman’s Tour of—And Escape From—Healthcareland.