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Living Room / Like a bad penny...
« on: January 21, 2022, 10:42 AM »
...the prodigal redheaded stepchild has returned. 
Now that I've got a real computer on my desk for the first time in years, I thought it was time to check in here, and vent a little about my ongoing medical problems while I'm at it.
After spending most of my time and money on musical pursuits over the last few years, I've been sidelined with a mysterious neurological condition. The current diagnosis, from 2 different neurologists, is an acute case of "That's Strange." I've been tested for the standard range of degenerative and autoimmune conditions - all negative. There's no sign of myelin damage, and no loss of muscle mass.
Despite that, I have significant neurological symptoms, ranging from numbness, tingling, weakness, and pain throughout my body, to loss of balance and loss of muscle control. These symptoms appear to be originating in my spinal cord, and most likely originating all the way up at my brain stem. In fact, one of the symptoms which has doctor's scratching their heads is that my symptoms all get worse as my neck is straightened to hold my head up in the proper position. If I drop my head, which I've been doing for years (more on that in a moment), my symptoms lessen. Fix my posture, and they come back with a vengeance.
Having been to a local neurologist, followed by a neuromuscular specialist at the University of Iowa, I'm now waiting to find out if the Mayo Clinic will see me. I'm not sure where I'm going to go if they don't, but while I'm waiting I thought I'd see if theinmates smart people here have any thoughts.
Where I think the doctors have gone wrong so far is ignoring what I consider the likely source of my problems. My parents were both exposed to Agent Orange in Vietnam. In fact, from what my mom has learned in recent years, she was probably exposed to massive amounts due to serving at the 24th Evac Hospital, which was a few miles down the road from Bien Hoa Air Base. Bien Hoa was where the Agent Orange operation was based, and remains the worst dioxin hotspot in the world. Apparently there was a standing order that any excess chemicals were to be sprayed on the hospital - a great idea if it weren't both inherently toxic in the heat and mixed at an insanely high concentration.
Mom left Vietnam in early 1968, just before the Tet Offensive. She was pregnant with my sister at the time. I was born in 1970. Fast forward about 45 years, and I started experiencing a variety of what turned out to be common neurological symptoms, connected to a variety of completely unrelated conditions. This was complicated by an existing shoulder problem, which was (and is) causing some minor symptoms.
Thanks to an excellent medical team, starting with my family doctor, and including a couple top notch physical therapists, I ended up putting shoulder surgery on indefinite hold because of what appeared to be a possible herniated disc. In fact, I did have a herniated disc, but it was exacerbated by another problem. My spinal canal, the tube that holds my spinal cord, is severely undersized.
Instead of being around an inch in diameter, it's around 3/8 of an inch. As a result, the herniated disc was pushing dangerously close to my spinal cord. I ended up having a near total cervical fusion (C3-T1). That took care of the worst symptom I had at the time (excruciating pain in my left arm). However, during recovery, I began experiencing new symptoms, spread throughout my body now.
In retrospect, this coincided with my rehab, and my efforts to address years of posture problems. By posture problems, I mean when I first went to physical therapy, there were several shoulder exercises I couldn't do at all because my shoulders were rolled so far forward. By years, I mean probably from the time my chronic knee problems started in my early 20s. I had my knee replaced when I was 42, but I never completely addressed what decades with a limp did to my posture.
As my symptoms worsened, and my physical therapist suspected a herniated disc in my back, my orthopedic surgeon ordered a full MRI of my back and neck. When it showed nothing, he referred me to a local neurologist. Although I was already convinced I would need more specialization than anyone local could offer, I knew the first step would be a basic neurological exam, followed by a battery of tests to rule out a standard range of rare diseases and disorders.
The closest to a positive result was 1 of 2 enzymes that could indicate Myasthenia Gravis being slightly elevated. The problem is it wouldn't explain most of my symptoms, and it's contraindicated my successful, if slow progressing, neck and shoulder rehab. The neuromuscular specialist I eventually saw at the university confirmed this.
When my local neurologist made the referral to Mayo, I made sure he asked for a specialist in neorodevelopmental disorders. The most common birth defects definitively tied to Agent Orange exposure in women are prenatal neural tube defects, mostly spinal bifida, which is also what I would expect such a doctor to specialize in. The question is whether I'll get someone ready to diagnose something they've never seen, and probably never heard of. At least I hopefully won't get the usual blank stare when I mention Agent Orange, so that's a step forward.
Other than complaining online, the only thing I have to do is play my bass, which is the only thing I can really do these days anyway. I'm not allowed to chop vegetables, because my wife doesn't trust me with the knife - and rightly so. I can't drive because my eyes don't focus correctly, and I'm not even allowed to walk up the steep stairs to the second floor because my balance is so bad.
It turns out, though, that I can still play, albeit with some physical adjustments for my fingers' habit of suddenly refusing to do what I want. My goal is to be out gigging again in a few months. It's entirely unrealistic, given my current symptoms, and lack of any treatment in the foreseeable future. Until reality actually steps in and stops me, though, it's my plan.
On the bright side, I now have access to the best parking spaces.
Now that I've got a real computer on my desk for the first time in years, I thought it was time to check in here, and vent a little about my ongoing medical problems while I'm at it.
After spending most of my time and money on musical pursuits over the last few years, I've been sidelined with a mysterious neurological condition. The current diagnosis, from 2 different neurologists, is an acute case of "That's Strange." I've been tested for the standard range of degenerative and autoimmune conditions - all negative. There's no sign of myelin damage, and no loss of muscle mass.
Despite that, I have significant neurological symptoms, ranging from numbness, tingling, weakness, and pain throughout my body, to loss of balance and loss of muscle control. These symptoms appear to be originating in my spinal cord, and most likely originating all the way up at my brain stem. In fact, one of the symptoms which has doctor's scratching their heads is that my symptoms all get worse as my neck is straightened to hold my head up in the proper position. If I drop my head, which I've been doing for years (more on that in a moment), my symptoms lessen. Fix my posture, and they come back with a vengeance.
Having been to a local neurologist, followed by a neuromuscular specialist at the University of Iowa, I'm now waiting to find out if the Mayo Clinic will see me. I'm not sure where I'm going to go if they don't, but while I'm waiting I thought I'd see if the
Where I think the doctors have gone wrong so far is ignoring what I consider the likely source of my problems. My parents were both exposed to Agent Orange in Vietnam. In fact, from what my mom has learned in recent years, she was probably exposed to massive amounts due to serving at the 24th Evac Hospital, which was a few miles down the road from Bien Hoa Air Base. Bien Hoa was where the Agent Orange operation was based, and remains the worst dioxin hotspot in the world. Apparently there was a standing order that any excess chemicals were to be sprayed on the hospital - a great idea if it weren't both inherently toxic in the heat and mixed at an insanely high concentration.
Mom left Vietnam in early 1968, just before the Tet Offensive. She was pregnant with my sister at the time. I was born in 1970. Fast forward about 45 years, and I started experiencing a variety of what turned out to be common neurological symptoms, connected to a variety of completely unrelated conditions. This was complicated by an existing shoulder problem, which was (and is) causing some minor symptoms.
Thanks to an excellent medical team, starting with my family doctor, and including a couple top notch physical therapists, I ended up putting shoulder surgery on indefinite hold because of what appeared to be a possible herniated disc. In fact, I did have a herniated disc, but it was exacerbated by another problem. My spinal canal, the tube that holds my spinal cord, is severely undersized.
Instead of being around an inch in diameter, it's around 3/8 of an inch. As a result, the herniated disc was pushing dangerously close to my spinal cord. I ended up having a near total cervical fusion (C3-T1). That took care of the worst symptom I had at the time (excruciating pain in my left arm). However, during recovery, I began experiencing new symptoms, spread throughout my body now.
In retrospect, this coincided with my rehab, and my efforts to address years of posture problems. By posture problems, I mean when I first went to physical therapy, there were several shoulder exercises I couldn't do at all because my shoulders were rolled so far forward. By years, I mean probably from the time my chronic knee problems started in my early 20s. I had my knee replaced when I was 42, but I never completely addressed what decades with a limp did to my posture.
As my symptoms worsened, and my physical therapist suspected a herniated disc in my back, my orthopedic surgeon ordered a full MRI of my back and neck. When it showed nothing, he referred me to a local neurologist. Although I was already convinced I would need more specialization than anyone local could offer, I knew the first step would be a basic neurological exam, followed by a battery of tests to rule out a standard range of rare diseases and disorders.
The closest to a positive result was 1 of 2 enzymes that could indicate Myasthenia Gravis being slightly elevated. The problem is it wouldn't explain most of my symptoms, and it's contraindicated my successful, if slow progressing, neck and shoulder rehab. The neuromuscular specialist I eventually saw at the university confirmed this.
When my local neurologist made the referral to Mayo, I made sure he asked for a specialist in neorodevelopmental disorders. The most common birth defects definitively tied to Agent Orange exposure in women are prenatal neural tube defects, mostly spinal bifida, which is also what I would expect such a doctor to specialize in. The question is whether I'll get someone ready to diagnose something they've never seen, and probably never heard of. At least I hopefully won't get the usual blank stare when I mention Agent Orange, so that's a step forward.
Other than complaining online, the only thing I have to do is play my bass, which is the only thing I can really do these days anyway. I'm not allowed to chop vegetables, because my wife doesn't trust me with the knife - and rightly so. I can't drive because my eyes don't focus correctly, and I'm not even allowed to walk up the steep stairs to the second floor because my balance is so bad.
It turns out, though, that I can still play, albeit with some physical adjustments for my fingers' habit of suddenly refusing to do what I want. My goal is to be out gigging again in a few months. It's entirely unrealistic, given my current symptoms, and lack of any treatment in the foreseeable future. Until reality actually steps in and stops me, though, it's my plan.
On the bright side, I now have access to the best parking spaces.