A Brief History of My Medical Issues

A brief history of my medical problems (in case you don’t already

Dear friends,

Looking at the updates I have been posting (on Facebook) and the notes, it occurs to me that some of you who have only recently found me again might not know why I am having these tests and problems. So here is a brief (even though it is long) summary of what has been going on the last couple of years.

In late 2005 I was diagnosed with Hashimoto’s Thyroiditis, and they found I had lumps on my thyroid.

In January I was given a needle biopsy of the thyroid. After the biopsy (I do not know if my neurological problems are connected to this biopsy, but it started within 3 days) I began having various neurological symptoms including bilateral facial paralysis (at its worst I had to pinch my mouth closed to chew), sensitivity to light and sound, double vision, blurred vision (for months my eyeglass prescription would change almost daily), changes in sense of taste, nausea, fatigue, drooping eyelids (the right side got so bad that at times I could not see out of that eye), facial tremors and jerks, dizziness, difficulty selecting words, peeling lips, extremely dry eyes that had to be taped shut at night, and excessive tearing (I looked like I was crying much of the time). Sometimes I actually was.

I went to the ER because I thought I was having a stroke. I was not, and they did not know what I was having. When I got home, I received a call telling me the biopsy results showed cancer. But I was too sick from the neurological problems to have surgery until I stabilized, so I had to let the cancer grow until July.

In March I was diagnosed with diabetes, possibly steroid-induced. A1C’s have been fine since.

In July 2006 I had my thyroid removed. The doctor said the cancer was massive and extensive, “in everything they touched.”

In September I had radiation treatment (I-131, 175 millicuries). This was the only time in my life (up till now) when I was literally “smoking hot.” The radiologist even used that term. I was so radioactive that she didn’t want me in the same building with her, saying, “I still want to have babies someday.” I wasn’t allowed to sleep with my wife for three days. When I used the restroom I had to flush three times. I couldn’t eat in restaurants for two weeks or go to airports or government buildings for six months.

Neurological symptoms improved somewhat but new problems appeared — when I tried to use one set of muscles, another would tense. For example, when I yawn or smile my eyes close. It doesn’t sound like much, but if I yawn while driving, I have to use my fingers to open my eye so I can see. This still happens and likely will for the rest of my life.

I worked with Dr. Bell and was tested for everything he could think of. He couldn’t find a cause but thought it might be Hashimoto’s Encephalopathy. I do not have Myasthenia Gravis (treatment for that made me worse), Lyme disease, or many other conditions.

The most likely cause is Hashimoto’s Encephalopathy — a condition where the immune system develops antibodies to attack a sick thyroid but instead attacks the brain itself. Symptoms can include confusion, disorientation, psychosis, coma, tremors, convulsions, concentration and memory problems, seizures, involuntary muscle jerks, fatigue, coordination difficulties, headaches, stroke-like episodes, paralysis, aphasia, and sudden death. The items I’ve marked are ones I have experienced.

Very little is known about this condition. In 1998 there had been only eight recorded cases in the U.S. Treatment is usually steroids, but in my case they didn’t work. My doctor wanted to try gamma globulin, but my insurance refused to pay for it — so, more tests.

By March 2007, most symptoms had improved, then I relapsed. The facial paralysis spread from the left side across to the right, reversing the recovery pattern. The left side of my body weakened; I had trouble lifting my arm, needed a cane for balance, and walked with an odd gait.

One possible cause of all immune system problems is stress. In April 2007, one major source of both stress and joy in my life ended when I came home one afternoon to find my wife dead. She died from cocaine use. We had been fighting her addiction for years.

From March 2007 until July 2008 I continued recovering, with occasional minor setbacks.

In June 2008 I had another setback: loss of facial control (moving left to right), weakness on my left side, tingling in face and limbs, and very dry lips. I began noticing it took effort to breathe.

In July 2008 a CAT scan found nodules in both lungs (1–3 mm). A PET scan showed granuloma disease and a lymph node in the back of my neck that “did not look right.” That’s the one biopsied.

By August 2008 I had two more breathing crises, one sending me to the ER.

Now it’s October, and I’ve had another day of breathing trouble and many more tests. I’ve added new doctors to my team, and we’re still trying to figure out what’s wrong.

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