Patient Stories

Allen’s Story

Chapter 1 – 4th of July, No Asbury Park

On the 4th of July weekend in the summer of 2013, I woke up extremely tired with leg pain. Being tired was nothing new to me. I make frequent trips to Asia, typically at least nine times a year so jet lag is pretty much a part of my life, but the tired I was feeling was something different, more like desperation than jet lag, and the leg pain was excruciating and something entirely new. The trip to the Jersey shore we were planning for the holiday weekend was out of the question.

As the days passed the symptoms spread to other body parts and became harder and harder to understand. The symptoms went up my right side first then to a lesser extent followed up my left side. Oddly everywhere I put my arm felt cold and wet. My skin was sensitive to touch. My fingertips became numb. Waking up every day was a horrible adventure as each day brought a new symptom. I couldn’t go to work and I couldn’t understand what was happening to me.

I didn’t have a lot of doctors at the time. I had a long-term relationship with my endocrinologist to treat diabetes, but I saw no other doctors with any regularity. I called my endo to see if the symptoms could possibly be related to diabetes or perhaps thyroid disease. He said no so we didn’t set up an appointment, but he recommended that I see an infectious disease specialist, as Lyme disease is not uncommon here in New Jersey and the symptoms were similar. A number of Lyme tests proved to be negative, as did all of the other tests he performed. The infectious disease guy didn’t seem too interested after all of the blood tests were negative and sent me on my way.

The days continued to pass and every day the symptoms progressed. I lost my sense of taste and smell. I tried to keep up with work email but I couldn’t feel the keyboard because of the finger numbness and as a result I couldn’t type except by an excruciatingly slow hunt-and-peck.

As long as I could still hunt-and-peck I thought I might as well try an on-line health site. I did a search on ‘lost-taste” and “everything feels wet.” The first two hits were cold/flu and endometrial cancer. I was pretty sure I didn’t have either of those. Note to everyone: The web is not an MD.

I was becoming increasingly desperate as the pain went from place to place without relenting. When the symptoms became overwhelming I went to the Emergency Room where the ER physician diagnosed me with kidney failure and admitted me. Finally, I thought, some progress. Well, the nephrologist was quite sure that I didn’t have kidney failure. Since I hadn’t eaten more than a half-slice of dry bread a day for a week or two my blood chemistries were completely out-of-whack. I suppose the emergency room guy could have figured that out but he didn’t bother to meet with me or ask a single question before making a diagnosis.

I spent some time in the hospital but they couldn’t figure out what was wrong and although the symptoms didn’t improve they sent me home. My wife pulled the car into the driveway and as we walked from the car to the house my right leg collapsed and I fell into the shrubs. It wasn’t just some leg weakness; I had no strength whatsoever. My leg might as well as been a piece of wet rope. I could no longer walk.

Back to the emergency room again where they took x-rays of the leg and said they were negative, and I should have the kidney failure addressed (the ER records still showed that I had kidney failure); they gave me crutches and a leg brace and sent me on my way. I still have not met the doctor. Note to self: find a new Emergency Room.

It occurred to me that the doctors I was visiting had never seen me before. I was wearing sweat pants, a hoodie, and winter house slippers in the 90-degree New Jersey summer. Why was I dressed in this odd garb? For one thing I was freezing and another I couldn’t manage to dress myself in anything requiring any level of dexterity. So elastic waistbands and house slippers were the order of the day. Further, I couldn’t get in and out of a shower or hold a hairbrush. My hair looked something like Einstein’s, and the rest of me looked like a madman. I suspect that the physicians I was seeing, in addition to being faced with a number of seemingly unrelated and bizarre symptoms, suspected they were talking to a crazy person. Note to self: Dress better if you want to be taken seriously.

Finally I had an appointment with my Endo, who took one look at me and reacted as he walked through the door, “What happened to you?” I explained the madness that I had been going through and the series of dead ends I had experienced. He looked again, checked my reflexes (it turned out I had no reflexes) and said that I was going to see a Neurologist tomorrow. He picked up the phone and called a neurologist and the next day I started Chapter 2. The Diagnosis.

Chapter 2 – The Diagnosis

My Endo and new neurologist both suspected immediately that I had Guillain-Barre Syndrome. Finally I had a name to attach to the symptoms. This was a relief as I had started to believe that I had lost my mind, or at the very least I was Patient 1 with something new that might be named for me, although probably posthumously. I mentioned that I was starting to get desperate, right? After all I had a series of bizarre and seemingly unrelated symptoms that were evolving every day as body system after body system was affected. Clearly the emotional low point was falling into the shrubbery, although watching my arms and legs lay flaccid as I failed the reflex test was gut wrenching.

The new problem was that there is no way to perform a direct test to positively diagnose GBS. As a result the doctors do a series of tests to show that you don’t have anything else. That is to say that if the tests are all negative (positive for nothing else), they may then diagnose GBS.

So I had a few questions. How did I get this? How is it treated? Why couldn’t anyone else figure it out? How do we find out if I have the acute or chronic form? What do we do now?

Chapter 3 – What do we do now?

It turns out that the first thing we do is go into intensive care. I wasn’t in immediate need of intensive care but there was the possibility that I could stop breathing. If that happened I would not have time to get to a hospital. By the way I was in a new hospital now. No sense having my kidneys treated.

How did I get it? Like many people in this predicament I had a preceding infection. An upper respiratory infection in my case, no different than those I have had in the past. Why did this one result in GBS? No one knows but there are some interesting theories.

How is it treated? Oftentimes it is not. In my case the doctors thought that it would resolve itself without treatment but it was lingering and finally was treated with intravenous immunoglobulin or IVIg, to shorten the duration. IVIg is one of the two typical treatments used to shorten the duration of the symptoms.

Why couldn’t anyone else figure this out? There are only about 2000 to 6000 (depending on your source) cases of GBS a year in the United States. Many doctors will see a case only very rarely in their careers, if at all. Second, if you are relatively healthy you probably do not know if your doctors are talented or not. Most of us only find this out after you need some care that tests their abilities. As a result of GBS I discovered at least three doctors and one emergency room that I won’t visit again. Lastly, I think there was a bias against believing a list of bizarre symptoms reeled off by an unfamiliar patient who looked something like Doc Brown from Back to the Future. Too many doctors let me leave their care without either a solution or a direction.

Do I have the acute or chronic form? Sorry, again there is no test. I found out I had the acute form after about a year, when it didn’t come back. To this day I walk on eggshells when I recover from a cold.

What do we do now? One day my doctor simply said go back to normal activity. I still have some numbness and tingling in my lower legs and feet; it is probably permanent, but I’m walking again and have no restrictions or lack of strength. I went back to work, continued to travel far too much, and so far I can keep up with my grandson. He’s only three and will undoubtedly outrun me one day but it wont be because of GBS. All in all it could have been worse. I’ll take it.