Part 1 How it started

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Jim got up one morning and began his routine of getting ready for work. His hands went numb and his voice became garbled. An ambulance arrived and drove him to the hospital. His legs felt like they were on fire. Jim doesn't recall much after that. His memory is fuzzy. However, he did learn that his case of GBS was one of two in the world at the time, where the symptoms started up and went down. Normally, they say GBS starts at the feet and comes up. Perhaps, Jim says, this is why it's taken him so long to recover.

When Jim called his brother that morning with garbled speech, his brother suspected a stroke. So, Jim was initially treated as a stroke victim. He wasn't a stroke victim. The time wasted in misdiagnosis caused Jim's eyes to dry out. His blink reflex was taken by GBS and missed by the staff looking for stroke symptoms. A nurse noted the signs and said she had seen this before and it was GBS. By the time the proper drugs to slow GBS were administered it was too late for Jim; his symptoms too severe.

In the months to follow, Jim would physically lose a great deal of ground. The severity of Jim's case would show itself after months of coma like symptoms.

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I must be the other of two in the world. My symptoms also started up and went down. How is Jim now and how long has it been?

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Wow - I imagine it is pretty hard to diagnose, because it is so rare. My family doctor told my parents that he had never seen it in his 40 years of practicing medicine. I recall when my family doctor gave me a spinal tap. I am sure after that he let some of the specialists take over. Jim, how are you doing now -

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Mine started up, and went down also.

I am not sure how "they" (the experts) decide what is common with GBS and what isnt. Things they quote from "the book" dont seem to be true in real life. But its hard to say. I have only met two other people who have had GBS in real life, plus a few online. I think the knowledge doctors have on GBS all can be traced back to one or two studies that involve a phone chat with patients a couple of years later. The studies asked questions, but it doesn’t say what the questions are. Maybe they are vague. Maybe there are only a few quesitons. I am not sure how many patients were even followed, but it could have been only ten or twenty people, which wouldnt give you a realistic picture. More needs to be done in order to understand this disease.

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I've neer written to an Ape before.

Folks, you are NOT the only ones. We are out here- in ast numbers- alone and filled with lonliness and questions. But my case sounds just like Jim's. Except it was all nine years.ago.

I dropped to the floor on a weekday with a temperture of 104 that had lingered for two days. I had just arranged to meet my doctor at the hispital. Newton-Wellesley Hospital is part of Massachusetts General Hospital. Because we are remarkably sick and confused we sit down in triage at the emergency room. There was a busy day and I sat in that emergency room ffor almost twelve hours. People with Bagel cuts and soccer injuries were going in before me as my body shut down there in the waiting room. I recall meeting a doctor at 2:30am and that's the last moment in the real world for six weeks. I too had a coma in which the most amaing hallucinations occured, I wrote a blog about my ear;ly stage and a second about the hallucinatoions and the coma if you want to look. 8 months later i was told it took 9 days to diagnose me. They too suspected a stroke because of facila lapse. all of the text book symptoms had been given them: My feet tingle; high temperature. On the eighth day there, comatose and on a veltilator my wife and two daughters, 6th grade and 8th, were called at 11:30pm to come to say good-bye to me.

It's nine years later and the guilt for that stings me to tears still.

But miracles happen- or things happen. A friend of my doctor, a neurologist from Beth Isreal Hospital in Boston, stopped by to have dinner and happen to meet up with my doc in my room.

She read the chart and said, "Did you think to do a spinal protein test?"

She saved my life.

I've met a least twenty people with GBS and spoken to ma y more. Duribng the third year of "recovery" I did my own research by contacting 33 survivors of GBS And aqsking detailed questions for statistical information and then personal narratives to dig into deeper details about the disease. I am certain that I have learned things that no one else has. However, I was, as you know, amazingly sick and I did not properly doccument my citations, interviews and graphs so to take the time and energy to ppublish was impossible. I came home to a divorce and I was the one who raised two teenage daughters and a Foster son.

It's nine years later and if there is anything you want to talk about- any of you, I guess- I'm here. One of the things I've nmoticed is that most of the people I've met here are recent patients.

And yes, even though I wass in Boston, most of the doctors with whom I worked had never before seen GBS. I recall dozens of doctors standing around my bed as though I were a medical school white board. Every procedure involved an audience. I was a musician, conductor and songwriter and was used tyo being on stage in front of an audience. This led to some odd hallucinations in coma, performing from a wheelchair or hospital bed before a house of people in white coats. It makes me smile to remember it.

We never know what ;life will bring. I'm a writerr now. OIt is lonely work compared the making music and theatre.

Dave

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Hi Dave, I too was in that hospital. I am now in a long term rehab facility on the Cape. If you’re ever around I’d love to talk. I like to know how you are and how long it’s been.

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I was stricken with GBS in 1975. I was a college junior and it started with my legs not carrying me and quickly took over my body. I stayed in my dorm room for 3 days after campus doctor told me I had the flu! By the 4th day...I think my roomate called my parents. They called me and did not recognize my voice on the phone. It had affected my vocal chords. The came to get me and rushed me to the ER running 207 fever. After several tests and a couple of days, they performed the first of 4 spinal taps. I was in the hospital completely paralyzed for 5 months. It is 2014 and for the last 3 years I am fighting ....what my neurologists says is a milder form of GBS....NEUROPATHY in my back and legs and is now traveling to my arms. I am always exhausted in pain. He tried me on all sorts of meds but as of now I just take cymbalta, elavil, and a muscle relaxer for the cramps. Anyone have anything similar or can help me direct this dr to helping me be "pain free"....if that is even possible.

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Debi26.

I do not believe that it is possible to "kill" the pain. It is part of our lives forever but there are many succesul combionations of medicines and things you can do to help manage the pain. I wsee a pain management specialist every month. I also take the drugs you mentioned but I also require noth Morphine and hydromorphone. However I know other patients who are fine with Lyrica and advil. We are all different and only you can know. For a while i had minor success with a tens unitl but really, it was too much trounle for what it provided. I now spend most of my time atigued and out cold and i manage the pain through meditation relaxation, various mind games and the drugs i entioned above.

Dave Seaman

For GBS Guy on the Cape, I so wish i was still in Boston or I would come to see you. I miss the Cape very much. I am now ar too ill to travel and live in a rural part or Central New York.