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Author Topic: Like a bad penny...  (Read 3223 times)

Vurbal

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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 the inmates 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.

I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Shades

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Re: Like a bad penny...
« Reply #1 on: January 21, 2022, 08:16 PM »
Life sure dealt you a bad hand.

Here's to hoping you are right about the cause and that it is acknowledged by your specialist, so treatment (if there is one) can start. And that knowing you were right all along, gives you at least piece of mind.

Good luck...from this inmate.

Vurbal

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Re: Like a bad penny...
« Reply #2 on: January 22, 2022, 05:10 AM »
Believe it or not, I (mostly) see myself as lucky. Having spent a lot of time reading about both spinal bifida and other Agent Orange related birth defects, I realize how much worse my life could have been. I was born with all my limbs, and without any physical or mental impairments.

When I put things into perspective, it could be a lot worse. I have financial stability, a supportive family around me, and at least a delusion of future goals. When I'm stuck at home, I have my music to keep me occupied. Lots of people don't have that much. I haven't always had that much.

At this point I figure every day on the right side of the dirt is a good one.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

kunkel321

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Re: Like a bad penny...
« Reply #3 on: January 22, 2022, 09:00 AM »
At this point I figure every day on the right side of the dirt is a good one.
This is gonna be my new motto.

tomos

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Re: Like a bad penny...
« Reply #4 on: January 22, 2022, 11:02 AM »
At this point I figure every day on the right side of the dirt is a good one.
This is gonna be my new motto.
Agreed, impressive 👍🏼
Best of luck with everything Vurbal
Tom

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Re: Like a bad penny...
« Reply #5 on: January 22, 2022, 06:53 PM »
Best of luck buddy!

Vurbal

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Re: Like a bad penny...
« Reply #6 on: January 23, 2022, 07:34 AM »
Thanks for the kind wishes!

Tomorrow I'll find out if Mayo wants to take me as a patient. Because it's hard to sit around and not obsess over it, I've been researching what my next option would be if they can't help. As I expected, it looks like all the next options are in Chicago. Actually, I was pleasantly surprised to find even more good neurology departments there than I had expected.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Tuxman

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Re: Like a bad penny...
« Reply #7 on: January 23, 2022, 10:08 PM »
Good luck! :)

Vurbal

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Re: Like a bad penny...
« Reply #8 on: January 24, 2022, 09:21 AM »
That was anticlimactic. I called this morning and found out they're still waiting on a letter from my doctor. Due to their name recognition, they have to weed out the people who should be able to get good care closer to home. Since they don't have time to read through every pile of records that comes in (mine might take a weekend by themselves), they request a 1 page summary letter from the referring doctor, explaining why they're sending the patient to Mayo. This is separate from the referral, which is really mostly about meeting insurance requirements.

Now I have to wait for them to fax that letter to Mayo, after which the 2 week clock for evaluating the referral starts. Very frustrating.

Maintaining a positive attitude is a full time job some days.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Vurbal

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Re: Like a bad penny...
« Reply #9 on: February 12, 2022, 04:42 AM »
So I jumped through hoops with Mayo for a month. The neurologists, for some reason, decided to kick the referral to Internal Medicine, where they, predictably, did exactly what every non-neurologist does when faced with neurological symptoms, and declined to see me as well.

I'm getting really tired of dealing with neurologists. Most of them seem to have the diagnostic skills of your average tech support phone monkey. They have a diagnostics flow chart, based on your symptoms, and don't know what to do when they get to the end without a diagnosis. God help you if you have symptoms that aren't even on their list, like I do.

The problem now is that I have to find a way to get through the screening process. I'm guessing it will be similar no matter where I go, which means they'll look at my symptoms, throw up their hands, and tell me to go somewhere else.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

mouser

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Re: Like a bad penny...
« Reply #10 on: February 13, 2022, 11:35 PM »
Good to see you, Vurbal  :Thmbsup: :Thmbsup: :Thmbsup:  And know that you are always welcome here.
-jesse

Vurbal

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Re: Like a bad penny...
« Reply #11 on: February 17, 2022, 05:37 AM »
Good to see you, Vurbal  :Thmbsup: :Thmbsup: :Thmbsup:  And know that you are always welcome here.
-jesse
It's great to be back! And I've always felt welcome here.  :)
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Vurbal

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Re: Like a bad penny...
« Reply #12 on: February 25, 2022, 10:08 AM »
After letting my local neurologist know about Mayo's decision, and that my symptoms continue to get worse, he managed to squeeze me in this morning. After a nudge in the right direction from me, he agreed that it's a good idea to do an brain scan (EEG) at this point. It seems insane to me that I would have to suggest that myself, but that's the state of neurological diagnostics today apparently. The reason nobody thought to do this before is simply that it's normally only used to diagnose seizures, which I don't appear to have.

The flip side of that is that you can't always identify seizures from external symptoms. Several years ago I read about a study, at Harvard IIRC, where they were performing brain scans on a group of autistic individuals. Along the way, they discovered that one of the subjects wasn't actually on the spectrum. The scan showed regular seizures occurring in his prefrontal cortex.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Vurbal

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Re: Like a bad penny...
« Reply #13 on: March 09, 2022, 06:31 AM »
My EEG results came back normal, which will surprise anyone who's known me for very long.  :tellme:

On one hand it's disappointing not to find anything out, but on the other hand, I actually did. The EEG tells me that my brain isn't aware there's anything screwy with my senses. It didn't even register when I felt the pulsing of a strobe light in my fingers and toes. My previous tests eliminated the long nerves spreading out from the spinal cord and the short nerves that create muscle groups.

That basically leaves my spinal cord, which is where I've believed the problem to be all along. Because my nerves in my head are affected, I can further narrow it down to the topmost part of my spinal cord. Beyond that, it still doesn't make any sense.

I've got a month and a half to educate myself on the spinal cord and brainstem before my next appointment. I found a neuroscience study guide for medical students on Audible, which I listen to when my eyes are too worn out to read or watch videos. Other than that, I'm still scouring the Internet for anything useful.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Vurbal

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Re: Like a bad penny...
« Reply #14 on: April 06, 2022, 06:44 AM »
About 2 weeks ago I was practicing my bass in the living room. Over the last few months it's felt like I was learning to play all over again, and I've developed a bad habit of staring at my fretboard, so I decided to start practicing in front of a mirror. That way I can eyeball position changes without looking down. After about 20 minutes I had to stop. My head was spinning like never before, my balance and coordination were even further off than usual, and I felt incredibly weak. The only thing that helped was reading on my phone in a brightly lit environment.

That was actually a big breakthrough for me, because now I realize that my symptoms at least aren't as complicated as they seem. There are actually 2 groups of symptoms. The first is the loss of information from literally every sense except sight and hearing. The others are caused by the motion sickness resulting from my vision sensing motion my body can't feel. I have the equivalent of VR sickness or space sickness, except worse, because I've almost entirely lost sensation in my internal organs.

This doesn't exactly get me closer to a diagnosis, but it does clarify the problem significantly. Since I won't be seeing my neurologist for almost 3 weeks, I did some testing on my own, hoping to verify my motion sickness hypothesis, and I'm sure of it now. I'm also really sick (pun intended) of motion sickness testing.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Joe Hone

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Re: Like a bad penny...
« Reply #15 on: April 06, 2022, 10:22 PM »
What you are experiencing sounds familiar. My wife is a former ICU critical care nurse who now works as a Nurse Practitioner. In her view, most physicians practice within a framework of what they were taught in medical school. Too often she finds physicians are stuck because of this, that it leads to an attitude that there isn't anything new to try. Thus, different generations of physicians practice differently, as do physicians from different medical schools. She offers no solution other than what you are doing, and that is to find a physician who is familiar with your symptoms, or who is willing to think outside the box. Here's hoping you find the right one soon!

40hz

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Re: Like a bad penny...
« Reply #16 on: April 09, 2022, 06:45 PM »
Hey Vurbal!

Been awhile since I last dropped by. Sorry to see this news first thing.

Wow! That’s a lot to have to deal with, huh?

No advice. And no idea what  to say either, other than good wishes and hope this all gets worked out for you.

Vurbal

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Re: Like a bad penny...
« Reply #17 on: May 12, 2022, 08:15 PM »
What you are experiencing sounds familiar. My wife is a former ICU critical care nurse who now works as a Nurse Practitioner. In her view, most physicians practice within a framework of what they were taught in medical school. Too often she finds physicians are stuck because of this, that it leads to an attitude that there isn't anything new to try. Thus, different generations of physicians practice differently, as do physicians from different medical schools. She offers no solution other than what you are doing, and that is to find a physician who is familiar with your symptoms, or who is willing to think outside the box. Here's hoping you find the right one soon!
I’m working on getting a new neurologist now, but I think I may have figured out what it is. It’s extremely rare, and there’s no cure. After watching a couple of presentations about it on YouTube, one for patients and one for doctors, it turns out most people are misdiagnosed for years.

If I’m right, my only hope of living another decade is getting into a drug trial. Otherwise, I’m likely to die from respiratory or cardiac problems within the next 5 years or so.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Vurbal

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Re: Like a bad penny...
« Reply #18 on: May 12, 2022, 08:23 PM »
Hey Vurbal!

Been awhile since I last dropped by. Sorry to see this news first thing.

Wow! That’s a lot to have to deal with, huh?

No advice. And no idea what  to say either, other than good wishes and hope this all gets worked out for you.
Thank you! I’m still fighting, and still playing bass. In fact, I’ve got a wonderful Kiesel JB5 that I’ve barely gotten to play out.

I go to a nearby jam on Sundays, where I at least get to play with some really good musicians, but I’m still hoping to get together with some friends who are putting a band together.

Do you post under the same name on TalkBass? I figured you did, but I just never got around to asking if it was you. I post under my real name (Rich Fiscus) there.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Vurbal

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Re: Like a bad penny...
« Reply #19 on: May 13, 2022, 11:52 AM »
Now I’m really pissed!

I just found an article, which mentions a local doctor who was treating a patient with MSA.

https://www.desmoine...me-atrophy/25439089/

It turns out she works in the same office as my neurologist. I sent him a message through their app asking if he had consulted with her, or anyone else for that matter, about my case.

In any case I’m demanding a referral to see her. I haven’t decided whether I’m going to file a complaint with their bosses about the piss poor treatment I’ve received so far.

I also have my family doctor, who is amazing BTW, sending a referral to an outside clinic. I’ll need a second opinion in any case, so there’s no reason to wait.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.

Vurbal

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Re: Like a bad penny...
« Reply #20 on: June 04, 2022, 05:50 AM »
Looks like it’s back on the merry go-round for me. Despite agreeing with me that multiple system atrophy is the only condition that explains all my symptoms, and also that it’s far more likely that I have one rare condition than two, my neurologist still refuses to officially diagnosed me with even possible or probable MSA.

Instead, I have to go back to the University of Iowa, where I can see a movement disorder specialist, you can then refer me back to Mayo. I actually suggested a couple of tests that I have uncovered that would help with the diagnosis, but he pointed out that they’re only available at Mayo.

Is it really too much to ask for a Doctor who understand science?

On a completely unrelated subject, Apple spellcheck apparently knows to capitalize Doctor Who. I’ve also noticed in recent years that Motorhead seems to be a pretty standard proper name for spellcheck libraries as well. I notice Apple doesn’t include the unnecessary umlaut, but I think Samsung does, or at least used to. Come to think of it, Apple used to have it to. I wonder if using the umlaut causes problems in some cases.
I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation
- The MC5

Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of ''crackpot'' than the stigma of conformity.
- Thomas J. Watson, Sr

It's not rocket surgery.
- Me


I recommend reading through my Bio before responding to any of my posts. It could save both of us a lot of time and frustration.