In 2004 my symptoms included forgetfulness (I would transpose names and dates. Say the wrong word in the wrong spot…), fatigue (taking naps in the middle of the day just to get through the day), loss of appetite (comes and goes ). loss of sexual desire (comes and goes), loss of sexual feeling (apparently the groin is part of the feelings on the left side), 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 mild mood swings. It started in my fingers and moved up, I would say that at first, I was about 10% numb and never really paid any attention to it, then it slowly progressed, to about 40% numb or desensitized, with periods of nearly complete numbness. Almost always numb or desensitized. There were periods of time that I would either cut myself on my left arm or burn myself and I didn’t even know it.
In 2004, I was 35 years old and had been out of the Marine Corps for six years. I lived in Northern Virginia with my wife and two young children. My son was ten and my daughter was two. The first real memory I have of something being off was around 2003-2004, my wife and I had a new child in the house, our lovely baby daughter who is the second of our children. I was having problems with numbness and forgetfulness, but nothing major. I went to my family practice doctor with the complaint of numbness and tingling in my left arm, she was concerned, but wasn’t sure what to make of it. At that point, it was more of a watch and see type of thing. I know that from time to time before this I had problems, but nothing that I really could pinpoint per-say. I mean since I got out the Corps six years prior, I had been clumsy from time to time, tried to fall up or down the stairs and forget some small things, but nothing that I would say was definitively a neurological problem. It was frustrating, but I just ignored it.
Then it happened, I was in the living room and I knelt down to tie my shoestring that had come undone and I stopped, paused and was 100% dumbfounded, what the hell, I can’t remember how to tie my shoe. Now being the stubborn Marine that I am, I internally mentally belittled myself, with things like “come on dumb-ass, just tie the freaking shoe already” and “seriously you can’t even tie a freaking shoe right”. That entire process was gone and I can’t find it anywhere, it was like it was never there. About three seconds later, I had been able to locate it in my brain and I tied my shoe like normal. I’m not really sure if this had happened before and I simply overlooked it or blew it off, but this time it was different. This time, my wife had witnessed it all and she pointed it out to me. I confessed to her what happened, I told her I just forgot for a few seconds how to tie my shoe. She was rightfully concerned, so we just kept a mental note of it.
The second time I recall having an issue was a few months later at Wal-Mart of all places, I was purchasing something and when it became time to sign for my credit card purchase, I simply forgot how to sign my freaking name, something that has been automatic for over 20 years now. It took a brief few seconds before I remembered what I needed to do, but seriously, forgetting how to sign your own name. Again, I was busted as my wife was right there to notice. I guess I had simply not been very honest with myself about any of this. It is time to take it seriously now, the Marine Corps adage of “suck it up” and “pain is weakness leaving the body” really didn’t apply here. I mean I have always had a very high tolerance for pain, I have always been able to look at the part of my body that is in pain and simply ignore it. But with this type of pain, it just doesn’t work. I can’t ignore it, I can’t redirect, I’m stuck with it for some reason and that is very frustrating to me.
I recently found some notes on my computer that I wrote in 2004 and I wrote that it all started about a year and a half ago, maybe longer, but I didn’t see a doctor until that time. Back then it was mostly numbness in the left arm and forgetfulness. I wasn’t forgetting things like dates, times and names, more like motor skills or automatic things, like forgetting how to tie my show or sign my name. I would have to stop for a very brief second and think how to do these things and then continue, it was frustrating, but I just ignored it. I went to the Family Practice doctor for a regular checkup. I got a physical and we talked about my problems, she was very concerned and she ordered X-rays of my neck thinking that it was most likely a pinched nerve in my neck caused by the minor car accident I was involved with in January of 2004.
My son and his friend were in my car when we got rear-ended. It was very minor, but still, she had a legitimate concern since I had several days of a very sore and a stiff neck after the accident.
So off to Medical Imaging and a series of x-rays, some 9 X-rays later, I was told that everything looked normal since they were looking specifically for a neck injury related to the car crash. My doctor was not done yet, nope, she sent me to a neurologist to have them run some more tests. We had our choice of who we could go to, and not knowing anything about neurology, we simply chose someone who was local (our first mistake)
Neurologist #1 (Dr. C)
My first neurologist Dr. C was local to me and I saw him for 6-months. He did some basic tests and then some questions followed by him ordering an MRI. He told me that it was either a brain tumor or a ruptured disk. Nice way to ease it doc, great bedside manner, nothing smooth about his approach either, simply no BS and said, it is likely a brain tumor or a ruptured disk. What, a brain tumor I remember thinking to myself, wow this could be serious. The look on my wife’s face told the entire story of what I was thinking. But we stuck with the plan at this point.
During this time, my symptoms progressed some, to where the fatigue started with me waking up tired and being less tired in the evening hours. Now I’m pretty much tired all the time, also includes muscle fatigue. I’m normally a very active person who never sits down. The numbness and tingling moved to my left leg, starting at my thigh and moving down to my foot. I would say it was about 40% numb at that time. I also noted that I was having groin numbness and tingling sensations as well. That came with bladder issues which were mostly lost of sensation, which made it hard to control the flow.
Around August and September of 2004, I had noted that I was stumbling more often (usually over nothing), Tripping over my left foot. And bumping into walls (normally with right shoulder). My wife noticed that I would place words in the wrong place of a sentence. I would use “week” instead of “day”. I would stumble looking for the next word to come out.
This was going to be my first time in the MRI tube. Now if you don’t know what an MRI is, officially 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.
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 and 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 arm and the 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 system (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”. What that accident was not even really a fender bender, but whatever.
He put me on a Nortriptyline, that he described to me as it 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 tells me that I need to increase by a 1/4 pill a day until I’m 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, 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 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 react fast, I was on a gurney and in a trauma room in no time flat. I was in a naked and in a gown before I knew what was going on. They had Nitroglycerin in me in no time and hooked 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.
Now if you don’t know what the hell an EEG test is, it is torture all by itself. Basically, they glue a ton of electrodes to your scalp and you wear them along with the electrical leads and the associated belt with a data recorder attached to it for a period of 24 hours. I remember finding it funny when they told me that I can go to work and carry out my normal day as though nothing is different. Really, are you high or something? I can’t go to work wearing all this gear. First it would be difficult to explain, second it would be embarrassing and third, oh wait I work in a classified government facility, and I’m pretty sure that they would frown upon me walking in with half the Internet glued to my head, The fun part of the test was not wearing it or washing the glue out of your hair afterward, it was that they told me that the data recorder on the belt failed and they want me to wear it again for 24 more hours. Nope, not going to happen, sorry. Another test logged in the “inconclusive” column.
It wasn’t long after all that goat rope, that Dr. Doogie ordered more tests to include a lumbar puncture also known as a spinal tap (used for Cerebrospinal Fluid Collection) and another EMG, this time focusing my legs and back. So I did the lumbar punch at the local hospital radiology department. Reading online prior to the test and from what everyone who had one told me is that it will be very painful and that I will likely have a very bad headache for the remainder of the day. Nope, not here, I remember laying on the table in the fetal position which is how they do the test, and the doctor telling me that they have enough and I said, enough what, in a very questioning tone, he said, spinal fluid and then I heard them open up the band-aid and tell me to slowly get up off the table. Really, done, already, but I didn’t feel a thing. It couldn’t be done already, wow that was quick and literally painless. Guess what no headache either. Next was another EMG, this time it was on the legs and back. I remember Doctor H, “nerding” all out as he was pushing the needle in my left lower calf area. He said, “Do you hear that that is something above C7” (C7 referring to the lowest bone in the cervical column or neck). I remember thinking to myself, yep, sure thing doc, sounds like static to me, but you do you and rock on bro. As he worked his way up my leg he gets to my upper thigh and then my lower back, I can hear it in his voice he is getting nervous. Then he asks me how I’m doing and I said, I’m all good, when are we going to start? And his now very anxious response was, you can’t feel that? In which I said, fell what doc, I feel a little pressure on the small of my back, why? Well, needless to say, he stopped the tests and told me that there is most certainly something going on and it is not in my head. He used the phrase “major muscle and or nerve damage” Which by the way is a great thing to hear when you keep taking test after test and they all come back “inconclusive”. He tells me that he had to stop the test since he is worried that since I can’t fell the needle that he could actually do real damage so he error-ed on the side of caution.
At my next appointment, the head and neck MRI came back “inconclusive”. Inconclusive, what the hell does that mean? Google to the rescue (and for the record, I know what it meant). Inconclusive, adjective, meaning: not leading to a firm conclusion; not ending doubt or dispute. Well hell, that made no sense to me, I mean I have conclusive evidence that I was in the MRI tube for three hours. I have conclusive memory of the whole thing. But no the results are inconclusive, which is a term I will soon learn to hate.
Next was eight hours of memory and motor skills tests with a neuropsychologist, Dr. P. Now those weren’t painful tests in the physical sense of painful, more like annoying is a better word for it. Basically, you take a long series of tests and questions to determine if you have neuropsychological issues. You know the round peg square hole type of tests, for a super fun two 4 hour sessions. And when I say annoying, I mean annoying, like how many times can you click the clicker with your right index finger, now the left. Or my all time favorite was every time you see the letter “J” on the screen, hit the space bar on the keyboard. I think that test got old in 10 seconds and it ran for like five minutes. I remember the night that Dr. P called and my wife and I both listen to the phone like two kids listening to the recorded voice of their favorite movie star. But when he read the results from those tests he stated that I have lost considerable motor function and feeling on the left side. Also, I have a hard time focusing and remembering short term things. Duh, I told them that, but still no diagnosis, but the neuropsychologist did mention the phrase “consistent with multiple sclerosis”, which was the closest we had come to a diagnosis so far. My wife and I were actually happy to hear this, not happy to hear the words Multiple Sclerosis per-say, but happy to hear that there is something concrete going on and it isn’t all in my freaking head. But Dr. P stated that his job is not to make a diagnosis, his job is to evaluate the test results.
When Doctor Doogie got the results he told us the results of the tests “inconclusive”, he said that they were consistent with Conversion Disorder, but he wanted to order an MRI of my spine next.
At this point in the game, my symptoms are still the left side numbness as a constant and the right side less numb and not as constant as the left. I have a heavy foot when I walk and my short term memory is pretty much in the toilet. I get tired very easy and the fatigue is a killer. My balance and coordination suck as well. I also experience more mood swings and anxiety. The best part is the shooting pains in my feet and hands (the pain jumps from 1 to 8 instantly, sometimes even worse), and I recently started to have blurred vision periodically as well as I can get period of being very shaky.
Next up was three hours in the MRI tube and that was rough, it is more like three hours in the tube of isolation. My smart-ass side of me would say it was like the old Get Smart Cone of Silence. I entered the room and the tech ushered me to a room with lockers and told me to remove my clothing and put on the gown and to ensure that I have no metal on me. When I was with the technician getting my”pep talk” prior to the procedure, I was told that he would be talking to me throughout the process and halfway through he would pull me out and inject contrast into the line and back in I would go. Well, that was a bald-faced lie, not one single word from this guy. This was my first time in the tube and let me tell you the only thing that kept me sane for those three long hours was a small speck of dirt on the top of the tube, just in my range of vision, if it wasn’t for that speck of dirt, I would have surely freaked out. I remember him giving me the button telling me that if I need out, just to press the button. Sure, that is the easy way out I thought, I’m tough I can take it. Sure enough, I think my brain wrestled with my subconscious the whole time fighting back and forth. “Just press the button and you can be done”, “nope, don’t be a pussy, suck it up”, “but press the button and we can go home”, “but if you press the button, you have to start over”. Then after a while I forgot about the button and the worst started to run throughout of my head, thoughts like, how long have I been in here, it has to be longer than three hours, I mean what if the building fell down around me, hell I wouldn’t be able to hear crap with all this clinking and clunking going on. What if the building caught on fire, I mean how long would I be strapped here going through this hell until someone found me. OMG, just press the freaking button already. If you have claustrophobia then the closed MRI tube is not the place for you, even if you have just a slight touch of it, avoid the MRI, you have been warned.
I think what saved me was just about the time I had about enough, suddenly the machine got quiet and the table I was laying on started to move, what is going on, you freaking mean I’m only halfway done with this shit? When I can see light I see the tech and he boldly asks me how am I doing. I asked, we only have way done and he said no, I have to inject the contrast and you have like 15 more minutes left. I thought to myself I can do 15 more minutes like a boss. Once the test was done, I was allowed to dress and escape that medieval torture chamber and hopefully never have to repeat that ever again.
But when Dr. Doogie got the results from all the tests, they came back as “inconclusive”. Dr. Doogie diagnosed it Conversion Disorder just like Dr. C did earlier. OK, time to stop this bull shit, I’m not getting anywhere, time to find a new doctor and Doogie can pop his cherry somewhere else. Nice vintage leather bag by the way doc, but playing doctor doesn’t make you one, I’m out of here. It was after that we discovered that he wasn’t actually in our insurance network any longer, gee, thanks for the larger bills doc.
Around this time the right side started to kick in, I mean why does the left side get to have all the fun, right. That was a rough period for me, I was trying to come to grips with all this and things were really changing for me. There would be periods of time that I would have to walk with a cane for a few days as my left leg was very weak and painful. That was the time when the phantom shooting pains, mostly in my right foot and left, started. These were some of the worst pains I had felt to date and as I stated before I have a high tolerance for pain, but these pains would make me cry.
I remember saying to myself screw this and I threw the cane in the trash, only to be quickly recovered by my son and put in the hall closet. I was done being a wimp and requiring a cane. That is not how I was raised and that is not the Marine Corps way. If I was still in the Corps, the Navy doctors would give me some Motrin, a bottle of water and tell me to suck it up buttercup.
By now my symptoms have changed, the biggest changes from six months ago are an increase in the shooting pains in my hands and feet, shaking when performing fine movements and cold feelings on my left knee. The rest of the symptoms from before are still there and having their fun with me.
Neurologist #3 (Dr. M)
The days leading up to the appointment I had some rather sharp shooting pains and one not so shooting, but most definitely sharp pain. At several times I thought that I was shooting lightning bolts out of my left ring finger. I was having to walk with the damn cane again. The day prior I was working in the yard with the family, cleaning it up for the fall and I had a very strange charlie horse type feeling in my right lower thigh and knee. It was very deep and felt like it was at the bone. My wife tried to help me with the pain, but the normal charlie horse routine had no effect. The pain lasted about five minutes and then let up to a much duller and manageable pain. It would shoot back up just to let me know it was there every so often for a minute or two. The day of the appointment the pains seemed to subside.
Next up on the rotating list of neurologists was Dr. M, she was probably the rudest doctor that I have ever seen and I spent 10 years in the Marine Corps being treated by Navy “doctors” for various things. The visit to the doctor, I’m only using the word doctor, because it’s in her title and on the piece of paper she had framed on the wall, was a complete waste of time. We entered her office and I sat on the table and she sat in her doctors’ stool. She opened my chart, and then she looked up at me and stated that she does not know why I’m here today. It was not in a question format, but more of a statement. That caught me off guard and I handed here the history sheet that I have been keeping. She took the sheet and glanced over it for a couple of seconds. I started to give her a brief history which started off with the numbness in the left arm which is when she stopped me and stated: “you’ve always had that numbness, but why are you here?”. Again a strong statement. I said I guess I don’t understand what she wants and she stated that she had looked at my chart for 10-15 minutes prior and that the doctor that I saw (who was in the same medical group, mistake number one), nearly six months ago had run all the test he could and they all were normal. Well that struck me as odd, I saw that doctor twice for 15 minutes each visit and within that time, he was able to run every single test available to him. What really set me off was she never asked me about my symptoms or if anything had changed in the past six month, which was the last time I saw a doctor for these issues.
She then stated that I have some type of enigma. Hmmm, enigma (One that is puzzling, ambiguous, or inexplicable.), yeah, OK, I’ll buy that, and that would be why I’m here. I stated that I’m upset because we seem to be getting conflicting information. I had tests run by Dr. P and Dr. H and they both indicated that the results were not normal and that there was something wrong. In fact, Dr. P stated that it was something real and that I was not making it up, but nonetheless, I’ve been diagnosed with Conversion Disorder. Dr. H told me that there were some serious muscle and nerve damage. I told her that however, Dr. Doogie stated that all the tests were normal. My wife then jumped in, obviously upset at the way the appointment was going. And stated that I had been turned down for life insurance because of this and that they are calling it Multiple Sclerosis. My wife stated that Dr. Doogie, however, is calling Conversion Disorder. The doctor quickly jumped in to defend Dr. Doogie and read from his notes stating that his notes claimed that the tests “to rule out Multiple Sclerosis”. Sounds like it was a reason for a test, not the outcome.
Well, this appointment lasted less than 10 minutes. I mean seriously, I waited months to get to see you and you came highly recommended and you didn’t even ask me one question or touch me and you came to the diagnosis that I’m perfectly well. Hmmmmm, I wonder if I can get away with something like that in my job.
I decided that I would describe what this was all like, the best that I can, so here I go, currently, my symptoms can best be described as it is like wearing an elbow length rubber glove on one hand with a tight rubber band on your wrist. Now on the other arm, you have coated it continuously with rubbing alcohol with makes it hypersensitive. Now back on the hand with the rubber glove, take a needle and periodically poke the tip of your finger inserting the needle in until it hits the bone. Now inside the glove make sure that you place a small vibrator that is turned on. Now on the same side as the arm with the glove, I want you to put on three pairs of socks on your foot and then strap-on a roller blade with one flat wheel. On the other leg, I want you to wear a 4″ high heel shoe. Again making sure that you place a few rubber bands around the leg with the roller blade and a device that constantly vibrates inside the sock. Now to make things more fun. Take a hot water bottle or device that produces heat and put that inside the three pairs of socks. And on your knee tape a cold pack. Sounds like fun, right, but wait, it gets better.
You also need to make your muscles very tired so before you do this, run up and down the stairs a dozen times, then suit up. Make sure that you put five-pound weights on your ankles and wrists as well.
Now for the motor skills fun. Take a couple of bungee cords and attach one end to your wrists and the other end, along with your arms and chest and attach it to your belt. Make sure that they are taunt. Do the same with your legs attaching the cords to your ankles. Now make sure that you have with you several needles and something hot and cold to randomly poke yourself with.
For 36 hours you will need to stay awake and drink plenty of caffeine to make you edgy and to really cloud your thoughts. Now try to function normally for the day. You will see that it is difficult to walk straight. Try to pick up small items with your gloved hand and try to make small delicate movements with the cords attached to your arms. Try to keep your thoughts straight and on track while being jittery and having shooting pains.
Now to have even more fun, you need to wear this for several days straight, then take it all off, get some sleep and function normally for a few days. Then repeat the cycle.
Oh, I also forgot to include other fun things like, not being able to sleep more than 2-3 hours a night, but not straight, you have to get it in 20-30 minute increments. And then there is the craving for chocolate that I have for some silly ass reason. And then there is the great time when you try to get intimate with your spouse. If you are a man, make sure that you put on 3-4 condoms before you get rolling, it makes it that much more frustrating and closely mimics the sensations I experience.
What else can I toss in the mix to make if feel more realistic? Oh, yeah the big one. Now see your doctor when you dressed up like this and have then tell you that you are perfectly healthy and nothing is wrong. Maybe it is Conversion Disorder or maybe you just want some attention (Munchhausen syndrome). Maybe it’s all in your head. Yep, that should make you feel even more comfortable about your symptoms.
How about trying to explain to your spouse and children how you feel and what is wrong. That is also a good time. Naturally, your spouse will be sympathetic and so will your children, but in my case, my 3-year-old is scared that Daddy is going to die, and my 11-year-old feels the same way and has friends that probably make fun of his dad for walking funny and acting goofy. Why would your children think you are going to die? Well, that’s a good one. Well you see, many neurological issues tend not to be a life-ending illness but are a real life-altering illness. Sure people die from complications from neurological issues (like Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Parkinson’s disease, and many others), but mostly after they have lived a long life. Then they will quickly call it “complications from Multiple sclerosis, Amyotrophic Lateral Sclerosis or Parkinson’s disease”. Which is just a newspaper tag line for let’s get this story finished quickly and move on. Yeah sure, comedian Richard Prior died of complications from Multiple sclerosis (though it was really his heart and drug abuse that killed him, not MS). Actor Jim Backus (Mr. Magoo and Thurston Howell III) died from complications of Parkinson’s disease. Baseball great Lou Gehrig died from complications of Amyotrophic Lateral Sclerosis. Neurological issues are so much life altering that once you are diagnosed with any of them, you will have a very difficult time getting life insurance. No insurance company in the world wants to touch you then. Good thing I’m covered.
Neurologist #4 (Dr. L.)
In early March 2006, we finally visited the next round of neurologists. This time we choose the Department of Neurology – University of Virginia School of Medicine in Charlottesville, Virginia. I remember not being overly impressed by the office, but what struck me as odd, as I was asked to disrobe and put on a gown, which is not normal for a Neurologist. Not sure why, but OK, whatever, it must be a doctor thing, probably a power trip thing. Shortly I was greeted by a student doctor who took my history and then left the room to present it to one of the doctors. A short time later I was greeted by Doctor D. He introduces himself as a student resident doctor which means that he is basically just about finished with his studies and ready to head out on his own. He sat down with me and my wife and got a verbal history and then did some basic testing on me to include testing my strength and reflexes. He seemed to be concerned about my left side strength and my right side reflexes. He left the room and about 30 minutes later Dr. L returned with him and they again ran more tests on me. Besides the reflex and strength tests, Dr. L also ran several perception tests and had me close my eyes and see if I can identify objects that he placed in my hands. For this test, I was blindfolded and Dr. L. placed several objects in my hand and wanted me to use just my left hand to identify the objects. I recalled him losing his cool right out of the gate for a brief second, only to later learn that the safety pin that was in the container that he poured into my hand had come open and was actually stuck in the middle of my hand. Now I never flinched, I never did anything because I never felt it. According to my wife, I did not do so well on the objects.
All said and done the two left talked with us about possibilities. They both seemed very sure that it was not Multiple Sclerosis. They, however, said that they wanted to run the last two remaining tests which were the Spinal Tap and Evoked response test. I had a VEP (Visual evoked response) test done over a year ago, but I never found out the results. Trying to get the medical records gathered and put into one spot is a feat all its self. Even after all that he told me that his tests were, wait for it, wait…… yep you guessed “inconclusive”, there is that freaking word one more time.
So at this point, this is the first time a doctor has actually mentioned the words Multiple Sclerosis to us. But on the downside, they once again mentioned Conversion Disorder, which was supposed to have been ruled out by Dr. P in 2005.
My symptoms by now were:
- Increased numbness on the left side (arm, leg, crotch, and face). (burnt arm several times, cut leg and hand several times)
- Shooting pains (hand and feet more likely)
- Frequent urination
- Feeling off balance
- Bumping into things every now and them (mainly with my arm or shoulder (usually the right side)
- Electrical sensations
- Stabbing pains
- Muscle spasms that can be seen under the skin, twitches
- I have intermittent slurred speech and misuse of words.
- I have had difficulty with comprehending simple written directions.
- I also have frequent diarrhea, and difficulty emptying my bladder completely.
- I suffer from bouts of debilitating fatigue and have trouble with insomnia and waking several times a night.
- History of myoclonic jerks
- Muscle weakness
- Shaking of hands when performing fine movements
- Mood swings
- Cold body parts like my knee
- Twitching of right eyelid
- Foot drop walking with a cane
- Vibrating in legs and arms
Neurologist #5 (Dr. S)
Then I finally got accepted into Johns Hopkins Medicine, which is like the end all be all for Neuroscience in the United States. I remember the long drive up to Baltimore and being all excited to finally skip all this BS and get somewhere in this process. Well, that turned out to be false hope. I remember my wife and I talking to the doctor, he had me walk once back and forth and then sit on the table. He talked to my wife for 10 minutes, never looked at me, never touched me, nothing, and then ordered several tests. The first was nerve biopsy, which is actually just as fun as it sounds, good thing I can’t fell shit. Basically, they use this really fun miniature “melon baller” tool and remove small sections of your skin so they can look at the nerve endings under a microscope, fun stuff. They removed some from my legs and my arms, it was fun. The next fun test yet another EEG on my left arm and right foot. Then it was all done and back home. In several weeks we found out that those tests were inconclusive. This is getting old really quick, I promised my wife that I would see one more doctor and if he can’t help, then screw it I will live with it and see where it goes.
I took a break from seeing neurologists in 2007 and that lasted for 7 years. During that time my symptom came and went, and many new ones came and decided to hang around for a while.
Some of my neurological symptoms changed while others stayed the same. I still had increased numbness on the left side (arm, leg, crotch, and face) and shooting pains (hand and feet), the feeling off balance stayed constant as well. I really started to bump into things every now and them (mainly with my arm or shoulder. The muscle spasms that can be seen under the skin ramped up as did the intermittent slurred speech and misuse of words. I now had difficulty with comprehending simple written directions. The fatigued ramped up to where I would suffer from bouts of debilitating fatigue and have trouble with insomnia and waking several times a night. The muscle weakness and shaking of hands when performing fine movements remained and the mood swings stayed as well. My left knee remained cold, and I started to get twitching of eyelids and vibrating sensations in legs and arms.
Laying in bed at night is often a fun experience. If the shooting pains have subsided long enough to get to sleep, then there is the never being a comfortable feeling to deal with and the game that I call the Indy 500. In Indy 500, just about every obscure muscle in your body will twitch just to let you know that it is there. Now, this is not all at the same time, a muscle in my arm may twitch, then one in my left, followed by my side, groin, toe, head, lips, back, buttocks, feet, then start all over again. Often it is a different muscle each time and in places, you never even thought of having muscles. Yeah, I know that we have muscles all over the body, but these are twitches are in places that you often don’t have control over, like try to twitch the muscle in your forearm, about six inches down from your elbow. Now only move about a one-inch segment of the muscle, and don’t move your fingers or biceps to make it move. Pretty strange huh.
Besides the pain the spastic muscles and the uncertainty of what’s going to happen next, I’d have to say for me the worst side effect would have to be the emotions. I was raised in a family where my father (or at least the person who provided the sperm, because he was not much of a father) where the children were to be seen and not heard. My father was a firm believer that children were to be his servants and do his bidding. One thing that was not well tolerated in that house was crying, especially for boys. My brother and I were chastised, to say the least for showing emotion and crying was not allowed. My emotions will run the gambit of crying one second (and I very seldom cry) to being so pissed off that you want to explode a second later, to being even-keeled the next second. Being raised in a very strict family, boys were not allowed to cry. I got ridiculed when I was about six years old for crying at my grandmothers funeral. And again a few years later at my grandfathers funeral. My father who, turned out to be the biggest prick I have ever met, would verbally abuse us kids from the time we got up to the time we went to bed. So I became harden and learned not to cry. But now as an adult who spent 10 years in the Marine Corps, I have caught myself crying for the strangest reasons.
Since I have been sick I have cried at just about everything and it happens at a drop of a hat. It’s not just the waterworks that has changed, but I now know what a woman going through PMS feels like at least from the emotional side of things. My moods will swing to the far left to the far right in a second. The smallest things will set me off or make me laugh. They are not violent moods, not even angry moods. I can be at a party with family and friends and laughing and having a great time and then something will happen that would not have an effect on a normal person that will cause me to get short. It lasts for a few minutes in most cases and then it’s back to the mood before. My wife and I would joke at times that it was like PMS including the cravings for yep, you guessed it, chocolate.