The MS Symptom Nobody Told You About

It was July of 2007 and I was waiting for the most important results of my life. I had had my first MRI two days before I was scheduled to leave town for a training in California with Dr. Joseph Riggio. The results I was awaiting  would either confirm or not that I had Multiple Sclerosis, as my neurologist at the time suspected. As you can imagine, I was anxious to hear from her. I called before I left for my trip, but the results weren’t in yet. So I called the following day, from California. Still no results. Finally, the next morning, I got a voicemail message from someone in her office saying that my results showed evidence of a “demyelinating process.” Nothing more was said.

I called the office to speak to the doctor. I said, “Do I have MS?”

She said, “You have lesions in your corpus callosum.”

I said, “Does that mean I have MS?! I don’t know what that means!”

She said, “I can’t tell you that over the phone.”

I said, “I’m in California. I can’t come into the office. But I’m sure you can understand that I really, really, REALLY want to know, so can you please just tell me?”

She said, “I’m sorry but it’s policy that we cannot give results over the phone.” She said it like she worked for the DMV.

I hung up, exasperated. I went back into the training room. My hands were sweaty. I could feel my heartbeat thumping in my chest. I was on the brink of a major anxiety attack. I was also in the midst of experiencing the MS symptom the medical community doesn’t talk about, because the symptom is the frustration with the system itself – a bureaucracy entangled in the mire of malpractice suits, HMO red tape, corruption, and ignorance. Here I was, obviously desperate for an answer, obviously in anguish, obviously wanting to know if my entire life was about to change forever, and my neurologist calmly and coldly quoted policy, clearly more concerned with the liability of giving me such a serious diagnosis over the phone than she was with my emotional experience. This was the first time I truly understood that my doctors’ motivations were not the same as mine. And that this illness would be as much about navigating the deeply flawed system of modern allopathic medicine as it would be about navigating the flawed system of my own ailing body.

Back in the training room, Joseph – in his trademark matter-of-factly humorous way – suggested that since doctors get bossed around so much in medical school, they’re used to it, and respond best to being engaged in that manner, so I might get better results calling her back and forcefully demanding to know my diagnosis. So I went back outside, called her back and did just that, but she continued to evade my questions.

She said, “You have lesions in your corpus callosum.”

So I said, “OK, let me ask you this way, then. If someone has lesions in their corpus callosum, could it be anything but MS?!”

To which she replied, “The chances would be very slim.”

And there I had it. My diagnosis. I had to bully it out of her, but I had my diagnosis. And with that one phrase, I was enlisted into a new and unfamiliar terrain.

I’m recounting this story here because if you’ve been diagnosed with a chronic illness, a huge part of taking control of your life now means navigating the maze of our country’s current medical system. This will be the topic of many, many posts on this blog, but for now I just want to outline some basic flaws in the current system that are working against us as patients within it. I am not a conspiracy theorist. I do believe there are good doctors out there with integrity and soul. My current neurologist appears to be one of them, which is why I continue to see him. But I do think it’s absolutely essential that we educate ourselves about the places where doctors’ motivations may differ from ours, so we can take that into account when making crucial treatment decisions.

1. The allopathic medicine paradigm – which is the standard-of-care in this country – is disease care, not health care. Doctors are trained to treat diseases, not prevent them or to strengthen and balance your body so it can heal. They are trained to treat symptoms with pharmaceutical drugs, and if those drugs give you symptoms, they prescribe more drugs to treat those symptoms. Each part of the body is treated as separate from the whole. Our doctors are not trained to look at our bodies holistically or to believe that healing is possible by restoring the natural balance of the system.

2. Doctors receive no to almost-no training on proper nutrition and the effects of diet on health. Only in the last few years are the more enlightened doctors beginning to get it, a little bit. However, most doctors are abysmally ignorant about what a healthy diet actually consists of, and at worst, they discount that diet has anything to do with your health at all.

3. Doctors are busy. For many doctors – not all of course – their education after Med school is primarily from pharmaceutical reps who are touting the benefits of their drugs. This creates a myopic perspective that does not take into account the many cutting-edge treatment possibilities outside of the well-funded pharmaceutical options.

4. Money. Unfortunately, many doctors prioritize it over integrity. The pharmaceutical companies wine and dine doctors. They sponsor vacations for them. They hold seminars where doctors are treated very, very nicely, and they talk about the benefits of their drugs. They offer discounts and promotions on their drugs, creating financial incentives for doctors to prescribe one drug over another. Meanwhile, Big Pharma’s lobbying power over our government is tremendous, so that regulatory laws are not put in place to stop these practices. At the same time, the FDA continues to block new, natural treatments with proven efficacy from entering our country.

And yet, despite all this, I am still optimistic. The system is so flawed, but there are good, educated, caring doctors out there. And what this information means is that if we want to get well, truly well, we need to educate ourselves. We cannot simply accept what your doctors tell us at face value without understanding the complexity of the system they are inside of. Healing and health and getting well is so much more vast than our doctors have the time, knowledge, understanding, or inclination to teach us. We need to take control of our health by finding out this information ourselves and using our doctors as one tool in our healing tool box, not our only source for information and treatment. If we choose to blindly follow our doctors advice, we are agreeing to be treated by a system that is severely skewed and largely corrupt. You may still choose to use pharmaceuticals to treat your illness, but do so because you’ve educated yourself on all the options first. I am not invested in how you choose to treat your illness. I am invested in making information available to as many people as possible, so that you can make wise choices for yourself and have the best possible chances to heal. I plan to do my best to bring everything I learn to you. Together, if we are willing to do the work, we can and we will get well.

Tags: allopathic medicine, diagnosis, diet, doctors, Dr. Joseph Riggio, healing, medical system, MRI, MS, Personal