autoimmune diseases – Words Not On Paper

*This post is part of a series. If you are new to the story begin here.

I had been sick for two years. Bounced from doctor to doctor with lengthy periods of waiting in between. I was looking for a diagnosis, and confident that my young doctor at Emory was the one who would finally get me back on a path to health. She had ordered “special tests,” and I only needed to wait two more weeks for the answer.

Actually, I saw no reason to wait until the appointment.

All the prior doctors had “patient portals.” These are internet sites through which you can access your medical records – appointments, lists of medications, test results, and messages. It is where the Redhead accumulated all the information that was in The Book.

Over the next three days, I received an email notification from Emory each time a new entry appeared in my medical record. These were the tests and the results. I was unfamiliar with most of them. Names like “Free Light Chains” and “Protein Electrophoresis.”

One addition to the Emory reporting system was an exclamation point (!) beside the test if the results were abnormal.

There were six tests – four had exclamation points.

I did not know what any of it meant, but I knew who did. I consulted “Dr. Google.”

Dr. Google had bad news. There were two likelihoods: multiple myeloma (a type of white blood cell cancer originating in the bone marrow), or a rare genetic condition called amyloidosis. Neither was good. My future included bone marrow biopsies and chemotherapy. Waitin’ around to die type stuff.

I got a second opinion from Dr. YouTube, who concurred.

I know it may sound hard to believe, but I was not devastated by the news. I was more stoic. In some strange way I was relieved that I had an illness with a treatment. When you are sick for a while, especially undiagnosed, you begin to think you might be crazy, and you are quite sure that others think you are.

The terrible thing about this experience was that I knew the Redhead was on her laptop across the room every night, conducting the same internet investigation.

One night I finally broached the subject.

“You know I have multiple myeloma, right?” I have never been one to beat around the bushes.

She began to cry.

“Hey,” I said. “It’s okay. We will get through this. I am strong.”

“I am glad to hear you say that, because I am going to need you to be.”

And that was that.

Another week passed and we made the trip back to Atlanta. We did not go straight to see the doctor but instead went to an exam room to get another Electromyography (EMG) test. This was a repeat of an earlier exam by another neurologist to determine if my neuropathy was progressing.

After a brief wait, the doctor came in with her intern in tow.

“Sir, the good news is that your neuropathy is not progressing. I have run all the tests that we have at our disposal, and I am sorry to say that your case is idiopathic. I simply cannot find an explanation.”

“You mean I don’t have multiple myeloma or amyloidosis?”

“No, no! Some of your test results were a little high, but nothing like we would expect to see with either of those conditions.”

I felt like all the air had gone out of the room. I was relieved – but stunned.

“So, what is next?”

“It is hard to say. You have some inflammation somewhere in your body which indicates some sort of autoimmune disorder. All we can do is try and manage your symptoms. I will give you some medication for your nerve pain and we will go from there. Sometimes cases like yours resolve themselves. It could be six months, a year, or a decade, but your symptoms may go away on their own. I am going to schedule an appointment to see you again in one year. In the meantime, call me if your nerve pain worsens. We may have to try several medications before we find one that works for you.”

We were quiet for a while on the ride home.

“Well, I guess we’re at the end of the line.”

“No,” she said.

“We have seen everyone I know to see and done everything we know to do. What else is there?”

“All the things,” she said. “We are going to try all the things.”

I had lofty expectations for Emory.

I thought a medical school and research hospital must surely be the kind of place where collaboration and innovation were commonplace. I imagined doctors and professors in the cafeteria having coffee and discussing their days. One doctor would say, “I had this unusual case yesterday. The patient was bit by a tick and now he has forgotten how to walk,” and another doctor would say, “Wait a minute, I read about a case like that in Zimbabwe in 2011. We may have Patient Zero! Get him back in here. I will list you as co-author on the article I will write for Neurology Today.”

My experience was only a little like that.

The first neurologist I saw was an attractive middle-aged Columbian woman who spoke the King’s in the manner of someone who learned the language classically rather than through Rosetta Stone. She spent an hour with me going through The Book, asking questions about this test or that. She and the Redhead discussed anomalies and their pertinence to a diagnosis.

She spent a lot of time looking at the Electromyography (EMG) test results. She checked my reflexes with a small rubber hammer and an instrument that looked like a tuning fork and stuck me with a needle at various points on my feet and hands.

“Do you feel this? This? How about now?”

She looked thoughtful for a moment. “You have ‘glove and boot’ neuropathy. It is not the classic manifestation of carpal or tarsal tunnel. The nerves are not conducting above the typical compression points. This EMG report and diagnosis is not altogether accurate.”

We went down the “cause” list as I had done with all the others. No diabetes, alcoholism, heavy metals, pesticide exposure or family history of autoimmune disease?

I asked if it could be Lyme Disease, since all my symptoms originated after hospitalization.

“Neurological Lyme Disease is very rare in Georgia.”

I let it go.

I asked if I was going to get worse.

“It is difficult to say. I am going to refer you to one of my colleagues who specializes in neuro-muscular medicine. She will want to repeat your EMG and run some additional blood tests to make a diagnosis.”

We returned two weeks later.

This doctor was a young Ecuadorian. She brought along another young resident doctor, and we spent well over an hour rehashing my history.

She asked some questions that none of the other doctors had.

“Do you have dry mouth?”

Yes.

“Digestive issues?”

Yes.

“Do you perspire normally?”

No, I meant to mention that. I have always been a heavy sweater, but now I never break a sweat, even during a hard workout at the gym or being outside.

She and the resident exchanged glances.

“Interesting.”

We ran down the list of causes of neuropathy again.

She sighed. “Sir, you need to understand that 20-30% of all cases of peripheral neuropathy are idiopathic. Do you know what this word means?”

I said I was fairly sure that it meant the doctor either was not clever or caring enough to figure out a diagnosis. That was why I was at Emory, and why I was so happy that she was my doctor.

I think she smiled behind that Covid mask. At least her eyes smiled.

“I am going to run some extremely specific blood tests, including a genetic profile that may reveal a few rare mutations that can cause symptoms like yours. We will repeat the EMG test when you come back to see if there has been any progression in damage to the nerve function.”

She walked us to the front and told the receptionist to make me an appointment in two weeks. She patted my shoulder and winked. “See you again soon.”

I was hopeful. She was the one. We would only have to wait two more weeks to finally get the answer.

I did not realize that it would be the longest two weeks of the two-year ordeal.

Tag: autoimmune diseases

Nine: All the Things

Eight: Southern Hospitality