"Big Merc" Mercodious' Medical Misadventures

[Mercodious]

Wow, it sure has been a while since I last posted anything. Then again, life has been rough for not just myself, but for everyone around the world. Quite often, things like this tend to slip through the cracks.

This topic is an update to my original topic. For those that either cannot remember what it was, or who have not read it before, you can find the topic here.

For those that don't want to read the original topic, I'll give a brief explanation.

2015: I suffered from an unknown issue that caused the disc between my C5/C6 to rupture. This lead to the collapse of both bones onto each other and also forcing the disc into my esophagus. The result was losing my voice for almost 4 months. This also sparked a wide area of pain around my neck and shoulders. Furthermore, if I were to talk for too long, eat too quickly, or drink too quickly, my throat would start to swell up around my esophagus, causing my voice to become raspy and winded until I eventually couldn't speak at all.
2018: After seeing many doctors and having many tests performed, it was deemed medically necessary to have neck surgery to remove the ruptured disc and replace it with an artificial disc. The surgery went well. Furthermore, in the same year, I also had surgery on my left shoulder to repair muscle damage, fix a labral tear, and remove some bone spurs. This surgery also went well. However, a few weeks after the shoulder surgery, I started having severe neck pains once more. It turns out that the disc replacement that I had 6 months ago had failed, slipping close to 50% outwards and into my esophagus.
2019: The same doctor who performed my original neck surgery went in and removed the artificial disc, then proceeded to perform a bone fusion of my C5/C6. Once again, this surgery went well. After I woke up from recovery, they moved me to my room. However, en route to my room, I suffered a stroke. Everyone panicked, including the janitor that was outside the room. Eventually, after several hours, and several scans, I was able to recover from the stroke and return to a normal speech pattern. The long lasting and permanent damage from the stroke would not show itself until a few weeks later. I had trouble walking and keeping balance, and my entire left side always felt weak and feeble. From that time forward, I have had to walk with a cane.

== Summary ==

After two neck surgeries, a shoulder surgery, and a stroke, my entire left side is permanently weakened. I have difficulty talking, eating, and drinking to the point of my throat swelling to near-shut if I am not careful. I have constant pain in between my spine and left shoulder blade that travels upwards into my neck and to the base of my skull. The pain also travels down the entire length of my left arm and left leg. My dexterity is suffering, as it is difficult to not only type, but to grasp objects, such as a controller, for extended periods of time.

There are plenty of more details to go over in regards to this traumatizing experience, but I feel as though this is a good summary. All information from this point forward will be updated information on my condition and my life. Hope you have a snack or two.

Since the incident in 2019, I've been visiting multiple doctors. Each time a doctor performs tests and scans, then comes up empty, I am pushed away towards another doctor. At one time, I actually had to drive 200 miles to see a new doctor so that I could get out of the so-called "Circle of Doctors" that most cities have. Left and right, forwards and back, circle after circle of these doctors with no answers. Why, it's almost as if the cure, or even the name of the condition, doesn't even exist. That was the case until I met my gastrointerologist.

She was the first doctor to actually know something related to what's going on, even though it was nowhere near her field of medicine. So, that day, she muttered a name that would forever be engrained in my mind as the only possible truth to this entire ordeal: Myasthenia Gravis. So, what is it? Well, in summary, it's a condition that is caused by severe, irreparable nerve damage that affects the entire body. How come no other doctor had an idea about this? Well, according to the National Organization for Rare Diseases (NORD), it's a condition that only affects 14 out of every 100,000 people. That's 0.014% of the world population. Sounds pretty insignificant, right?

This now brings us to the present, per se. Actually, about a week prior to this posting. Once again, I am off to see a new doctor, a neurologist. The appointment was slated for 9:30am and scheduled to last about 45 minutes. Since it was a bit of a drive, I left an hour early to ensure I made it on time. Once I got there, time became irrelevant. After multiple talks about my health conditions and my medical history, I was sent to the lab to have some blood drawn for more testing. Yay... When I arrived at the lab, to my surprise, there were literally 20+ tubes ready to go for my blood. I thought to myself "Alright! A new personal best record!" Needless to say, about a full pint of blood, maybe more, was taken from me for these tests. By the time I was all finished and ready to leave the doctor, it was 1:15pm. How could a 45 minute visit last over 5 hours? Well, it's because of this neurologist. Let me tell you straight, she was NOT going to beat about the bush. She was determined, more so than any doctor I've been to, to figure this out. I even brought up the possibility of Myasthenia Gravis to her, and she agreed that it sounds possible. In fact, a few of those blood tests were there for the sole purpose of testing for specific irregularities in my blood that could be linked to Myastenia Gravis. I returned to my car, lovingly named "Scooty Puff Sr," and breathed a sigh of relief. Finally, after all these years, after all this time, is this doctor going to figure it out? I sure do hope so.

In the mean time, I am basically confined to my little desk, managing the household by way of sitting in my chair. I still do a little housework here and there, and I take care of my two young boys (Ages 4 and 2) while still finding the time for some gaming here and there. It has started to hurt more while holding a controller, so I can only play or drive for maybe an hour before having to take a break. The same also goes for typing, as I've had to save this post as a draft quite a few times before finally being able to publish it. I used to love handling long drives on both ATS and ETS2, but now I can only do shroter drives in small bursts. I still get the same amount of enjoyment from playing, but I wish I could do more. Unfortunately, my desk is too small to support a steering wheel, shifter, and pedals. I do have a new desk on the way, which is a little bit bigger than my current desk (Current desk is 8+ years old and is held together by brackets, screws, a few empty pill bottles, and some stickers) and should support a nice setup, but money constraints will have to make me wait a bit more to find the right set of equipment. The only real regret I have about my desk is that I accidentally left my scale model big rig that came with the copy of ATS: Enchanted Edition on my desk, resulting in my 4 year old grabbing it and breaking the grill off the truck. To this day, I have still not found it, but I know it must be somewhere in the house. I might stumble upon it when we move, but that could be years or even decades away. Until then, my truck still sits on my desk, but much higher.

I know I am not unique with my situation, and I don't claim to be unique. My real purpose is to just tell my story and to hopefully spur a bit of interest in it. Who knows? Maybe someone you know is suffering from the same symptoms and hasn't found an answer to it yet. This could be a clue to lead them in the right direction. I know that there are many, many more virtual truckers out there who all suffer from some sort of diabolical medical ailment, and I salute you all for continuing to search for answers and for continuing to play the game. I know it's hard, and I know it's tough, but you are not the only one out there who knows how it feels. It may be hard to reach out and tell your own story, but if I can do it, then I know you can, too. So, let's hear it! Let's make the #BestCommunityEver even better and support one another in our quest for answers!

Oh, and next time you happen to see "Big Merc" Mercodious pop up on your CB range finder, why not say hi? I'll gladly stop on the side to have a conversation with you.

For those interested in seeing my health updates, I post them regularly as new information becomes available. They are all public posts and can be viewed on my Facebook profile, which is here.
I also try to post relevant pictures along with the updates, such as the picture of all of the tubes for the blood taking.

For those that wish to reach out to me directly, you are more than welcome to leave me a message. I'll answer every single one I get.

For everyone else, I suppose just leave a comment or two. I'll do my best to respond to everyone.

Thank you for reading.

[flight50]

Hi Big Merc. Welcome back. Funny you posted because I thought about you about 3-4 months ago and wondered where you went. I remember your story though and I was really happy to hear were keeping your head up. Same thing applies today. I hope you get some type of relief here soon. But at least now, you have much more hope than ever before. Keep that head up high though.

[Mercodious]

Hey there flight50! It's been a bit rough, but I definitely have not given up hope. I really don't want to be one of those dads who just sits in his chair being miserable all day. I want my boys to remember me as the fun, loving, and energetic dad that I am. However, it's very heartbreaking and depressing knowing that there are certain things that you used to be able to do without any problems that you just cannot do anymore, like picking them up and playing outside with them. The desire to do these things once again is what keeps me going, and I won't give up just to forsake my boys.

[flight50]

Life is never perfect so no need to give up. Sometimes things are just out of our control. Putting your best foot forward is about all you can do. Your will for your boys is strong. You may not be able to do somethings as you once could but just being there means a lot more in their eyes.

[Mercodious]

Welp, I got a call from my new neurologist on Friday. She managed to get all of the blood test results back in record time. As far as what was found, it wasn't much. I suppose you can call that good news, but I like to think of it as bad news as well. Sure, it's great that nothing was too out of the ordinary, however, this also means that nothing was too out of the ordinary. It's rather similar to finding a dead end road while driving. Anyways, the results of the tests only pointed out two irregularities: an elevated white blood cell count, and an elevated cholestorol level.

With those two results, she went ahead and prescribed a cholestorol medication for me, and she recommended that I start an aspirin regimen. She also recommended that I continue to take the muscle relaxers that were prescribed to me by my primary care doctor, and to inquire about getting aditional refills. I do have to admit that I very much dislike taking all of these different medications just so I can function in my day to day life. Every time a new one is added, I get worried that there might be a medicinal conflict. Unfortunately, there is one. It turns out that the cholestorol medication is causing me to get very light headed and dizzy when I stand up. This is further compounded with the feeling that I am losing my balance, and hard. Since those two days of being subjected to those effects, I've moved my cholestorol medication to the end of the list, meaning that I take it at night before heading to bed. I am hoping that this will not only clear up any potential down falls, but it might also build up a tolerance to the side effects so they either will not be as severe or just will not happen at all.

Medications aside, I do have a follow up appointment with my neurologist on the 27th for a Lower EMG. I've had so many of those tests performed over the years that I could have a punch out card completely filled with holes, thus making this one "free." She is also in the works with scheduling something called an MRA, which is supposedly very similar to an MRI, but they focus on the blood vessels instead. She is definitely trying everything in the book so far to see if any of my other doctors have missed anything important. The funny thing about the two tests is that she is the first neurologist (out of the 4 I've seen in the past) to actually state that these tests are very important.

So, in summary, the blood tests came back about as normal as can be, but I do have a few new pills I need to take every day. I have a few new tests coming up that might help shed some light on what my condition is, as it still doesn't have a name. Until then, I'm basically sitting as this dead end road until something comes along and points me in a new direction. Day to day life is still difficult, but I am pushing myself through. Gaming and typing are still moderaely difficult, but I am doing what I can to just drive my shiny truck to help my mind forget about the pain and just focus on enjoying the scenery and talking to folks here and there. I'm still trying to narrow down a steering wheel/shifter setup to help relieve some of the pain in my hands from using my controller. Hopefully a nice one will go on sale soon.

I'll continue to post updates in this thread for those who are interested in reading them. I know it's not much, but if you happen to know someone that is going through a similar situation as myself, then I sincerely hope that my story can help point them in the right direction to get the medical assistance they need.

[flight50]

Hey there Big Merc. Hang in there man. I know its easier said than done. I have a proposal for you though. I think I can help you with that wheel setup. Check your pm.

[Mercodious]

It's been quite a while since the last update, and I apologize for not checking back sooner.

As you may know, I was scheduled for the CTA/MRA and a lower EMG that focused on my head/neck and left leg/arm, respectively. I finally have all of the results in!

For the CTA/MRA, they decided to stick with the regular CTA and introduce the contrast via an IV system. It was an interesting feeling, as it literally made me feel all warm and fuzzy inside. I would recommend going back just for that part, heh. However, the results were less than satisfying. After the review, the doctor came back and told me that all of my blood vessels in my head and in my neck appeared to be normal, with nothing out of the ordinary that was blatently obvious. Sure, that's good news, but also bad news as it begs the question "What next?"

For the Lower EMG, the test is simple. The doctor places a positive and negative diode sticker between the ends of specific muscles. Next, they place a reading diode, or receiving diode, in an area that can measure the amount of nerve energy traveling down the nerves. Once the stickers are placed, they then put a zapper-like tool that looks similar to a regular electric shaver on your body, and proceed to zap you multiple times at multiple power levels. Once that portion of the test is complete, they move all of the stickers to a new location and repeat the process. On to part 2 of the test, and a part that I definitely hate. Instead of using the stickers and the zapper to measure the nerve power, they now use a needle that looks and feels like a broken straw. They take that needle and poke you in specific areas, really digging it in. To add insult to injury, they then ask you to move that body part in a specific fashion. This part of the test is designed to "listen" to the nerves to see if the right amount of power is flowing through them. If they sound all staticy, then things sound fine. If there are random jumps, skips, or even silences in the static, then the flow is being interrupted somehow. This can be caused by things such as slower responses from your nerves, or even damaged nerves that are not fully healed. Regardless, the results were still equally less than satisfying. Although everything in my leg seemed to be normal, the nerves in my arms showed several areas of pinched nerve endings and some damaged nerves. This would explain the random pinches I feel in my left arm, the numbness and tingling I constantly feel in my hand, and the random bouts of weakness or total loss of control for a few seconds or several minutes that I experience.

With those two tests finally completed, I know a little bit more about some of the symptoms in my left arm. However, as good as the results were for showing normal, healthy nerves and blood vessels, the doctors still can't explain the overall problem on where the pain is originating from, or how they can treat it. For the time being, I am basically on a stand-by, waiting for my neurologist to call me back to see where we go from here. Outside of that waiting, I have been doing some research and information gathering on the possibility of having to visit a place such as The Mayo Clinic, or even The Cleveland Clinic. Considering that the closest Mayo Clinic is 500 miles away, and The Cleveland Clinic is 600 miles away, it would be one heck of a drive to get there and back. Then again, this may be my only viable option for a doctor to finally be able to diagnose me. The problem? I'm a stay-at-home dad raising two boys, one of which is Level 2 Non-Verbal Autistic. My wife really needs me at home to take care of them, as she can't do it by herself and work at the same time.

To sum it all up, I am basically at a "Hurry Up And Wait" situation once again. I'll try to do better about checking back often and replying to messages. Again, my apologies for not doing so sooner.

Note: If any other truckers out there are going through a similar situation as me, I'd love to hear about it. After all, we need all the support we can get, and learning from one another about things that we've tried before might help guide someone in the right direction for their medical issues. I'd love to try and help!

[Mercodious]

Hey there everyone. I'm back with another medical update. I have to apologize for the delay, as I've had a lot happening in the last couple of months both with doctors and with family obligations. I wanted to wait until I had a follow-up visit with my neurologist before posting an update. With that being said, here we go...

As you may know from the last post, I was awaiting a referral to The Mayo Clinic or The Cleveland Clinic. Since that time, I had a referrral placed for The Mayo Clinic. A few days after this was placed, the clinic itself gave me a call. They wanted to get some more detail on the situation at hand before making a decision. After roughly a week of waiting, and a week of anxiety, I finally received a call back from the clinic. However, it was not the call I was hoping for. Based off the tests that I have already had performed, the testing facilities that are available to me, and the testing facilities that are available at The Mayo Clinic, they believe that there is nothing they can offer me in ways of figuring out what I am going through, or even helping figure out a new direction to travel. In short, they can't help me. Keep in mind that it's not that they don't want to help me, it's that they don't think a trip there would be worth it.

I'm sure that most of you can imagine a situation in where you are all hyped up about the potential to do something great, something to help move your life forward and find the answers you seek, only then to have yet another brick wall shoved in your face. Naturally, this made my mental health take a little bit of a nose dive. After a week or so of trying to mentally recover from the bad news, I decided to ask my primary care doctor about a referral to a psychiatrist. After the referral went through, I had a visit with them. The entire time that I was going over the questions being asked, their eyes were wide and their jaw was jacked. It's safe to say that they were in a small amount of shock while I told them the story of what I have gone through and where I am today. When I look back on it now, it's kind of funny, but the humor ends there. Between the time I went to visit with them and the current day, I've had yet another problem arise: blackouts. In the span of less than one month, I've experienced two different instances of where I would be standing, feeling fine, and all of a sudden just black out and collapse onto the floor. My wife just happened to be standing next to me and managed to catch me when it happened for the first time, however she was not standing next to me during the second time, and I slammed the floor rather awkwardly, causing me to sprain my left ankle. I still have no explaination as to why this happened, but I am hoping for an answer from one of my doctors.

And now, this moves us to today, 08/19/2021, the day of the follow-up appointment with my neurologist. We spent the good part of 30 minutes just going over the events during the span of the few months from the prior appointment. After discussing everything, she stood silent for about a minute or two, and then started to furiously type on her laptop. It was as if you could hear the cogwheels turning. The results? Well, my blood pressure is staying in the higher levels for almost everything, so I now have to monitor it on a day to day basis and even keep a chart. Hooray for Excel! On top of that, she has instructed me to try my best to take it a little slower and a little easier, as the sudden change of posture can potentially trigger a blackout. Another test she is wanting to have performed is an MRI rescan of my brain, but focused on specific areas. She believes that the most recent scans are not thorough enough, and they might not have thought to focus on looking for very specific signs of stroke damage. I am really hoping that this will work. Furthermore, she is referring me to a cardiologist to discuss the blackouts, and potentially put me onto some blood pressure medication. Finally, she has sent in a new referral to The University of Alabama in Birmingham. She still strongly believes that she needs to send me to a "higher power" for medical analysis, and I couldn't agree more. Fortunately, the facility is much closer to me than the closest Mayo Clinic, so that's always good. I am hoping beyond hope that they not only accept me, but that they are willing to go above and beyond to help find an answer.

Well, that, my friends, sums up the events between my last post and this current post. I want to sincerely thank everyone who has not only read these stories, but also everyone who has left me a message or reply. This mental struggle to stay positive in the face of constant defeat is taxing, so the support from something as simple as a "best wishes" reply is tremendous. I will try to keep this topic going with more updates in the future.

Thank you for your time.

[Mercodious]

I copy/pasted this directly from my Facebook page. Unfortunately, it's much the same in terms of bad news, but I wanted to post it anyways.

== Health Update #32 ==

Geeze... These are almost as old as I am now.

Long story short, I finally got the message that I've been dreading. It came from the neurologist that I visit in Cleveland. She has delivered unto me the final stattement that all doctors don't wish to give to their patients: "I'm sorry, but there's nothing else we can do to help."

Although I've had this message before from a few other doctors, it still stings to know that there is nothing else that my doctor can offer in a way to find an answer. And so, I take the walk of shame, destined to wander until another doctor has something to offer. This second doctor is going to be a specialist. What do they specialize in? I don't know. What I -DO- know is that they are located within the University of Alabama Medical Center, nestled in the city of Birmingham. I have an appointment with them in mid April of 2022 to see what new, exciting tests they have to offer me. However, if this goes over about as well as the referrals to the Mayo Clinic went, then I am going to be walking into the office and talking to yet another brick wall. I still have high hopes that someone somewhere knows the answer, but it's really starting to look bleak.

Anyways, I'll post another update after I visit this new doctor. Surely I'll have some new information, even if it's bad news. I just want to know.

[Mercodious]

== Health Update #33 ==
What did I learn after spending 8 hours in the car today?
I learned about FUNCTIONAL NEUROLOGICAL DISORDER.
Today was my visit with the specialist neurologist located at the University of Alabama in Birmingham. It was quite a drive there and back.
After the years and years of medical visits, tests, and more tests, this is apparently the culmination of everything, wraped up in a neat little package. So, do I feel better knowing an actual diagnosis that summarizes everything I am going through? Yeah, a little bit. I'm not 100% satisfied with the result, but at least this is a new direction to look at. Is it treatable? Not exactly, but there are signs that show recovery is possible of some, if not most/all or the symptoms given enough time and therapy. What are the next steps? Well, I have to continue going to see my doctors that I normally see, I have to try and reduce the stress and anxiety in my life, and I need to do my best to keep a positive outlook on things. One of the potential "treatments" for FND is to follow those steps, so here we go.
The doctor also gave me a website to look at. Feel free to read up on FND if you are really bored. Clicky.