Mid 07: Mayo Clinic begins diagnosis

I spent the last week (June 2007) at the Mayo Clinic in Scottsdale/Phoenix, trying to figure out why my pelvic region has taken on some of the characteristics of a person twice my age.

The executive summary: It's a good news/bad news thing. I don't have cancer, it's still a mystery.

I arrived in Scottsdale last Tuesday night to begin the Mayo process Wednesday morning. I met with the main doctor assigned to me, gave him the run-down on the multitude of doctors I have seen, the tests I have been through, and the opinions I have received. Using a pretty sophisticated scheduling system, the doc clicked on all the tests he wanted to order and all the doctors he wanted me to see within the clinic. He gave me the once-over and then sent me to the scheduling department where they printed me out an itinerary resembling a college schedule. My follow up visit with him was to be today.

I then began the poke and prod process. In the past week, I got an ECG to check my heart, an EMG to check nerve conductivity (and inflict severe pain), chest X-rays, a blood pressure monitor for 24 hours straight, an autonomic reflex test, several blood tests, a CT scan, a meeting with a urologist, meeting with a neurologist, and my favorite, the balloon up my rear end test. There were more, but I can't remember them all. Whole lotta pokin and proddin........

Overall, I'd say the clinic is the standard by which medical clinics ought to emulate when it comes to promptness. The LONGEST I waited for any appointment in a waiting room was 12 minutes (yes I timed it once I got curious on how prompt everything was). I had at least 20 nurses and technicians apologize for the wait when I was supposed to be in at 2:55 and they brought me in at 2:57. The place is also spotless, signs clearly mark everything, and every person I ran across took a Mayo-approved friendly pill before they came to work each day. Even the janitors were courteous and were able to direct people to certain parts of the clinic. Reminded me of Disneyland for sick people, but my God there were some awfully sick people there. Made me feel like I don't have it so bad.

The results?
Apparently I am not insane or crazy or stressed out as some Doctors have suggested. Not to name names, but that was the University of Utah's theory.
Though I found ways to amuse myself by timing the nurses and technicians and asked them to verify their name and age after they asked me to verify mine (none did), it wasn't really all that fun to be at the Mayo Clinic for a week trying to diagnose a condition that will probably end up in some Medical Journal.

For awhile I thought a bit like maybe Utah wasn't so far off base because trips to various doctors have been met with head scratching, the phrase "interesting case," and one doctor even said he'd shoot himself if all his patients were like me. But this trip seemed to have confirmed there really is some neurological reason for my troubles. For the first time, a doctor said to me "this is 100% a neurological condition" and he seconded the theory that I got from UCLA earlier this year. The basic theory Conus Medularus Myelitis. The Conus Medularus is a little bulblike structure that sits at the base of the spinal cord and controls all the pelvic functions.
The cord looks like a skinny tree or the stalk of a green onion, the Conus is the root ball at the bottom, and the nerves all come out of there like the roots. Where the roots all come out is called the Cauda Equina (latin for "horse's tail"). Something - maybe someone? - is pinching, poking, stabbing, compressing, sitting, standing, leading, biting or doing something that my Conus doesn't like, and my Conus is expressing its displeasure through my 5 famous symptoms.

I don't have cancer, and I don't appear to have any other ugly diseases that will shorten my lifespan. That's the good news. The bad news is they still don't know the cause. The relatively high white blood count in my spinal fluid (16 white blood cells per cubic millimeter - no more than 5 is normal) is the only study that has actually measured or quantified this (other than the tests that confirmed the symptoms). None of the MRI's CT scans, blood tests, urine test, etc. shows the problem.
Nothing. Not the high resolution MRI at UCLA, not the CT scan at Mayo, nothing. Only the spinal fluid count. It basically says I have an inflammation or an infection in the spinal fluid, which the neurologist says confirms the Conus theory.

Like I said, it's a good news/bad news thing. Because we don't have a diagnosis of the cause, we don't have a prognosis, no determination on whether it will get worse or better, and of course, no treatment. No surgery, no medications.

Soooooooo, where does it go from here? The symptoms continue and yes it's a royal pain to manage, but like I said, I feel fairly fortunate after seeing the people running through the clinic. Overhearing normal looking people talking on their cell phone in the waiting room about their spreading tumor is a sobering piece of eavesdropping.

I will have to go back to the clinic sometime in the next month for some follow up visits. I need to send the Mayo docs more records from UCLA, most notably on my spinal fluid and the microbiology from that. The neurologist said I don't need many more tests, only someone to really ponder my situation and seek the solution. I hope he was meaning himself. I hope he consults the UCLA doc.

That's the story. There really isn't any need to reply to this. I really didn't spend 2 hours finding a list of people I hate to send this to, so I know you care. :) What I really hope is you pass this to someone who has had this or knows about it or knows of a doc who knows about it and puts me in touch. I'm dealing with a very rare, downright bizarre neurological condition at the spinal cord and central nervous system, something that is hard to test for and probably even harder to treat, so any piece of data or information I can wrap my fingers around would be appreciated.

The flight home was great. 90 minutes from Scottsdale to Henderson, averaging 160 knots.


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