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My life seems to be devolving into a series of doctors visits, interspersed among long waits to hear results of tests. I was going to wait for the definitive word before launching into this saga, but the often promised conclusive visit has again been kicked down the road, this time into next month. Parkinson's
I fired my first neurologist (John Pierpont) just prior to leaving for Mongolia in May of 2012, and I've not had one in the two years since then. I can't say I missed the relationship, but those who care about me (as evidenced by their constant encouragement [nagging]) finally prevailed, and I hired another. I visited with Dr. Cynthia Reed, and found her to be a reasonable choice. She noted a couple of a couple of symptoms that she felt were "non-Parkinson" and referred me to another neurologist with a slightly different specialty. Dr. Reed also prescribed some "transdermal" patches that are designed to deliver a constant dose of rotigotine (which is supposed to ameliorate Parkinson's symptoms) totaling 4 mg per 24 hours. In the process of establishing reliable usage patterns, I encountered some nasty side effects, including nausea, sleep disruption, and intense anger. These subsided in a few days, and hopefully will prove to have been transient. About a month after visiting with her, I received a letter from Dr. Reed's practice stating that she had taken a leave of absence for an indefinite length of time. That turned out to be a short relationship...Dr. Diana Benenati, the neurologist to whom Dr. Read referred me, ran a series of relatively unpleasant electro-conductivity tests (surface conductivity verses intra-muscular conductivity [shocked, then stabbed and shocked again]) on a Thursday, and promised to call me on the following Tuesday with the results. Three weeks later, I managed to reach Dr. Benenati's "secretary," named Alpha, by phone (contrary to the tidings on their answering machine, they do not respond to your message within 24 hours) and learned that I had been diagnosed with "severe idiopathic peripheral neuropathy." Idiopathic means the cause is unknown, peripheral means (literally) around the edges (but the medical establishment uses it to refer to the feet and lower legs), and neuropathy means diseased nerves. Given that I am still ambulatory, I would dispute the "severe" portion of the diagnosis. Dr. Benenati then ordered a series of blood tests, including a paraneoplastic panel. In my 9 years as a med. tech. I never had a patient needing this test series, the implication being that it is fairly rare... I had my blood drawn at my old lab in San Manuel. They sent it to Sonora Quest Lab in Tempi, who sent that panel on to the Mayo Clinic Lab in Rochester, MN. Four weeks later, the results came back, and a week after that I was able to obtain a copy. Five days later I was able to reach Alpha by phone, only to learn that Dr. Benenati was on vacation and was scheduled to return in ten days. Alpha looked over the lab report and told me (incorrectly) that there were no abnormal results. Twelve days later, I was again able to contact Alpha and learned that, "Your results are being copied into the chart," and Alpha would have Dr. Benenati call me that afternoon to discuss those results. Four days later, the scheduler from that office called and gave me an inconvenient time for a follow-up appointment two weeks in the future ("I'm sorry, but if you can't make that time, our next available slot is in October...). Somehow, I don't see this as the beginning of a long-term relationship.
Having taken pains to set up my straw man (SCLC), let me now demolish it. I don't have SCLC, and I reached that conclusion from the following three observations:
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Tachycardia
No news on this front, except that (at the urging of my wife) I had another visit with Dr. Ajay Tuli, my cardiologist. Dr. Tuli, in response to pointed questions, assured me that leaving my supra-ventricular tachycardia untreated in no way increased my chances of having either a heart attack, or a stroke.
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Cataracts
No news (is good news)? I'm still fighting with my insurance company... |
Tendonitis
I have acquired an new diagnosis: Tendonitis. When I was young, I collected notches on my canteen by passing hikers on the trail. Now, I collect medical diagnoses. The origin of this particular malady is not obvious, but I think it has to do with getting in a tugging match with my dog, Compton, when he tried to run off with my left wrist, coupled with hyper flection of said wrist, while leaning on it to finish the cement floor during the construction of the shed. At any rate, the affected arm has become increasingly painful, and correspondingly less useful. When Barbara could no longer stand my whining, she (against my wishes and over my objections) dug out a wrist brace from one of her prior medical adventures. After realizing that resistance was futile, I decided to placate her by wearing the brace for a few minutes. Much to my surprise, it helped greatly, reducing the pain by at least 85%. To make a long story short, although it is too small for me, I wear it for as long as I can tolerate the constriction--trading one discomfort for another. I now have an appointment to see an orthopedist. This appointment is 2.5 hours before I am scheduled to see my remaining neurologist. The commute between their offices (if the orthopedist runs behind schedule) could be exciting...That should bring you all up to date on what passes for adventures in my world... |
The results of the lab tests contained three abnormal values, two of which are trivial. The third is from the paraneoplastic panel (P/Q type calcium channel binding antibody present), and portends bad things. The report reads, "This profile, in the proper clinical context, would support neurological autoimmunity." In other words, I'm making antibodies that attack my own nerves. That is the bad news. The report referenced an article that implies the condition with this abnormal antibody is called, "Lambert-Eaton myasthenic syndrome" (LEMS). The really bad news is that half the people with this syndrome have cancer, and of those who have cancer, 97% have small cell lung carcinoma (SCLC). SCLC is an aggressive, fast growing cancer with a poor prognosis (life expectancy at diagnosis is 18 to 24 months, with 3% survival at 5 years). The anti-nerve antibodies present in LEMS are actually being elicited by the cancer cells.
Although she slept through it, Barbara again provided some excitement for the medical community. Barbara left with our daughter, Andrea, and her family, Michael, and Athen, en route to a visit with both her daughters (and particularly their children). The first day in the car was "unremarkable", but the second day made up for it. Barbara became fell asleep during the first part of the trip, and simply didn't wake up. When it became clear that Barbara was unresponsive (for more than 10 hours), Andrea became a bit concerned and called La Rena (now a registered nurse). La Rena, who was at the hospital working at the time, appealed to one of the doctors there. A blood pressure cuff and an O2 saturation meter were acquired, and upon learning the results of these readings, the medical personnel involved decided a visit to an emergency room was indicated. The rest of the story is contained in Barbara's Facebook post.
Well, My trip started out pretty eventful with BOTH of my daughters, La Rena Coiner, Andrea Restivo & son-in-law Michael Restivo, REALLY literally SAVING MY LIFE!!
I HAD A FEELING TO LET Andrea & Michael know about my health problems, allergies, meds, etc., but I pushed it aside and didn't do it so.... instead they ended up being grilled by the ER people about my medical info. which they really didn't know hardly anything about. I found out later on, that the hospital personnel thought I might be having a stroke, so I had a CT scan of my head and ultrasounds of my kidneys.
I was riding along with my daughter, son-in-law & grandson, (Andrea & Michael Restivo & Athen Johnson - 8 years old). We left Oracle, AZ. and spent the night on Lackland, AFB in San Antonio, TX. The last thing I remember was getting in their truck and then getting on the interstate ...
The next thing I knew was someone thumping on my chest and trying to wake me up. I found out I was in the ICU in Singing River Hospital, near Biloxi, Mississippi. To make a story short, I was going into renal failure because of my blood pressure medicine. My blood pressure had gone down to 70/?.
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Since Andrea & Michael were on leave from the Air Force, I told them to go ahead and take Athen to the beach. I never thought it at the time, but my clothes were in my suitcase in their truck. They had cut off my clothes in the ER, so I had none. I do know, it REALLY SUCKS when ALL you have with you is your own socks and a beautiful hospital gown.
While at a gas station, Athen made a new friend named "Clyde". Yes, he has a diaper on because he was riding with "his family" in their truck.
(Since La Rena takes much better photos than I do, I stole this picture that she had taken of her family off her facebook page.) While I was down there visiting, I kept telling them that I just loved their blue eyes. I think my granddaughter's have some of the prettiest blue eyes I've ever seen. It is no wonder who they inherited them from. I was really pleased to be able to getting to know my son-in-law, John. It was thoughtful of them to invite me to go to church with them. I also was able to go out to The Waffle House for breakfast with John and Maddy. Then on the last night, they took me out to dinner. I greatly appreciated the kindness and the thoughtfulness that the Coiner's showed me. It both, humbles and give me great comfort being able to spend time getting to know both Michael, and John. I feel we are truly blessed to have such smart, talented, and highly skilled, young men in my family. (It also doesn't hurt that they are nice looking and have good personalities too!)
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| I finally finished putting the skin on the shed. I procrastinated that job because it was so nice being in there on hot days. That much shade coupled with an almost continuous breeze was pleasant. It would have been perfect for a outside bar-b-que. But the approaching rainy season put an end to those thoughts, and I did what had to be done. Getting the siding to bend around the corners was a bit of a trick, but a chain and a come-along can work wonders. I have not yet hung any doors. |
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About the only other news was Mylinda's visit, and given that she has stopped by to visit most of you, that probably doesn't feel much like news. |
| Barbara was here for the very first part of Mylinda's visit, but then left for the south and dreams of surfing the beach... Did you know that before the internet, surfing meant riding ocean waves near a beach? How quaint! |
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Alex could not decide whether on not he wanted to be sick, and Mylinda could not decide whether or not to treat him. He did seem to improve with time. |
| Lauren and I had an interesting discussion about aunts and ants. I suspect she left thinking that she has a grandfather who is a bit hard of understanding. Not that I would ever try to give anyone that impression... |
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I enjoyed visiting with Mylinda and her kids, but I don't pretend to understand how she can stand to on the road for that long. About the second night I spend away from my pillow, I start counting the hours until I'm home again... Still, I'm glad she came. |