This was going to be my first time in the MRI tube. Now if you don’t know what an MRI is, it is technically called Magnetic Resonance Imaging, but to me, it was better known as a torture table. If you have never had one, basically you are strapped to a table, but if you are lucky enough to have your, brain scanned, they have this really fun little cage that they fasten over your head to hold it in place making it so you can’t move it. All in all, it wasn’t a terrible experience. I had headphones to wear and I got to select my music, but after the procedure, I was a little dizzy likely from the rhythmic nature of the MRI machine itself. When the results came back from the MRI it was noted as negative. Negative for what, a brain? Negative from what, I still wonder today.
On my second visit to Dr. C, I had increased numbness in the left arm and now in the left lower leg. He dismissed the leg concentrated on the left arm and started to check for carpal tunnel syndrome.
Next came the Evoked Response Tests (ERT), which are basically audio and visual tests, where you are visually or auditory stimulated, and those responses are measured through electrodes that are connected to a headband that you are wearing. All in all a simple and painless test
Then he ran a Visual evoked response or potential (VER or VEP), which is when the eyes are stimulated by looking at a test pattern.
Next, it was a nerve conduction test Electromyography (EMG) on my right arm. By then the left leg was starting to get numb and the arm was about 30% numb (from shoulder to fingertips, but I would guess that I lost 30% of the feeling.). My wife would hold my hand I would not feel it. I would sleep and wake up, not being able to feel or move my hand. Now the EMG itself is basically a very sadistic test. They put electrodes on your arm and on your fingers, hand, and wrist, they use a needle connected to a wire. Then they send an electrical current through the needle to the electrodes, as the doctor madly cries out in his best Dr. Henry Frankenstein voice “Look! It’s moving. It’s alive. It’s alive… It’s alive, it’s moving, it’s alive, it’s alive, it’s alive, it’s alive, IT’S ALIVE!”. Oh wait I got carried away there, but seriously, he ran small amounts of electricity through my arm multiple times to test the nerve responses. Of course, that test came back as “inconclusive” as they were really looking for something like carpal tunnel and not listening to what I said was happening.
It was about this time that the neurologist told me that he thought I may have Conversion Disorder that was brought on by a traumatic event in my life, he thought it was the minor car accident I had in January of 2004. Conversion Disorder, what the hell is that? Conversion Disorder is described as “Conversion disorder is a mental condition in which a person has blindness, paralysis, or other nervous systems (neurologic) symptoms that cannot be explained by medical evaluation.” Ahhh, that translates to one to two things. Thing 1: We have no clue what is wrong with you, nor do we really care to figure it out, so we will label it as this and say that you are making it all up in your head, or Thing 2: We have no clue what is really wrong with you right now, but we hope to keep you coming back for more visits as I have a boat payment that is due every month”. That accident was not even really a fender bender, but whatever.
He put me on a Nortriptyline, which he described to me as would lower the pressure placed on the veins. He stated that he thought that the muscles around the veins were constricting the blood flow in the arm. , Sure I’ll play along, what do I have to lose? He wanted me to take a 1/4 pill and told me that I needed to increase by a 1/4 pill a day until I was taking the full dosage. Sure, whatever, no problem doc, this is easy. Went home and took my first dosage, I slept for 12 hours straight, what the hell if a 1/4 of a 5mg pill knocked my ass out for 12 hours straight, what the hell will a half of a pill do and how on earth am I ever going to get up to the full amount?
This medication was stopped and a new one called Lexapro, which is used to treat depression. Nope, not depressed, not even close. I was able to better tolerate this medication, but it had no effect on my symptoms. This medication was stopped halfway through the treatment due to an emergency room visit for pressure on my chest.
Emergency Room Visit
One morning I was on my way to work and I turned around and went back home, I was having an empty feeling in my chest, and my wife took me to the ER to have it checked out. Which resulted in a full 36-hour cardiac workup, with two stress tests, all checked out well with the ticker. Later I discovered it is a new symptom, that is best described as MS Hug. Now if you have no idea what the hell MS Hug is, it is best to describe it as getting a bear hug by a huge linebacker. I was relieved to know that it wasn’t my heart, but that was surely a fun experience. I mean when I went to the ER and mentioned those fun words as “Chest Pain” boy they reacted fast, I was on a gurney and in a trauma room in no time flat. I was naked and in a gown before I knew what was going on. They had Nitroglycerin in me in no time and hooked me up to a ton of wires and tubes in seconds flat. Since I was on my way to work at 7 a.m. I hadn’t had my breakfast yet and I would soon learn that I wasn’t going to eat for another 36 freak-long hours. Nothing sucks worse than not really being sick but being in the hospital. But I understood that they had tests to do and I was only 36 years old and didn’t want to hear for one second that I was having a heart attack. So I played the game. I remember having to run a stress test after not eating for close to 48 hours. It was painful, to say the least, but I played along and I thought getting to see the results of a nuclear stress test was pretty cool. I got to see the blood pumping through my body and that was awesome.
If you have never had a stress test, it is where they put you in a padded room and a dozen or so Marine Corps drill instructors yell at you as you do push-ups. I wish, now that would be fun said every Marine ever. But actually, a stress test is similar to a walk or jog in the park. They hook you up to a heart monitor and they have you run on a treadmill until you reach a target heart rate. The target heart rate is 85% of the maximum heart rate predicted for a person your age. On the treadmill, they increase the speed, incline, and resistance every three minutes, until you reach your target rate. then you usually have to maintain this target rate for a short period of time. Sound like a great time had by no one, but all in all the test isn’t that bad. Tests all showed that my heart was not a risk and I was in great cardiac health. Stress tests also revealed that I was able to maintain the required heart rate on the treadmill for more than twice the required length of time, without any abnormalities. So this scare was done, it is not the heart, awesome, time to move on.
Doctor C and I did not click well. He was far too clinical for my liking and wanted to try medications on me without first understanding the symptoms and causes. Based on all this, I made the choice to stop the medication and seek a new doctor. My family practice doctor agreed and even ordered more tests, this time they were all blood tests. To check for specific biomarkers and to check for Lyme disease, Lupus, Epstein-Barr virus, neurosyphilis, Diabetes, B-12 deficiency, HIV/AIDS, rare hereditary disorders, and other really fun stuff. Those tests came back of course “inconclusive”, my new least favorite word.2
Neurologist #2 (Dr. Doogie)
Off to a new neurologist, with high hopes that maybe I can get into Johns Hopkins Medicine in Baltimore and see a “top of the line” neurologist. But for now, it was time to move out of the small local area and see if a big-town doctor could help. The next doctor was young and I mean very young, I had shoes that were older than his. He was so young that my wife and I nicknamed him “Doogie Howser“, from the early 90’s TV show starring Neil Patrick Harris. Now Dr. Doogie was nice enough, I remember him gloating about the vintage leather doctor’s bag that his girlfriend bought for him. He was like a kid showing off his new Hot Wheels cars. But at least he ordered tests and I hoped I could maybe be the one that popped his diagnosis cherry so to speak. It was around that time when my symptoms really kicked in. There was a period of time when I could not feel my entire left side including my face.
The symptoms included forgetfulness and now I would transpose names and dates. Say the wrong word in the wrong spot, things like that, nothing major, just annoying and potentially embarrassing depending on the crowd, very fatigued, taking naps in the middle of the day just to get through the day. Now let me tell you that taking a nap period is just not me, I’m usually the energizer bunny from the time I wake up to the time I lay down for bed. I had bouts of loss of appetite and long with a period of loss of sexual desire, which often included the loss of sexual feeling (apparently the groin is part of the feelings on the left side). It also included the ever-fun pins and needles feelings (my left side would be numb then it would all feel like it had fallen asleep and it was now getting blood back into it), and major mood swings.