April 2004
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), and 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 when 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 se. I mean since I got out of 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 me, 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 Walmart 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 my 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 it, and 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 about 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 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 his 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, and 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, which 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 loss of sensation, which made it hard to control the flow.
Around August and September of 2004, I noted that I was stumbling more often (usually over nothing), Tripping over my left foot. And bumping into walls (normally with the right shoulder). My wife noticed that I would place words in the wrong place in a sentence. I would use “week” instead of “day”. I would stumble looking for the next word to come out.
I know that had to be scary when it all started, not knowing (well you really still don’t know, do you?) Forgetting something as automatic as how to tie a shoe or write your name would freak me out. I never had to deal with the memory issues, just the pain for me.
I started from the first date in “My Story”.
M
It was a little frightening at first, more so mentally disturbing than anything else. Being somewhat of a perfectionist those types of things really freak you out. I mean I learned to tie a show some 48 years ago, seriously.