I never really knew what hell was until my disease process started. I think the worst part hasn't been the pain, it's been the lack of answers from the medical authorities on what is wrong with me. The Mayo clinic has turned me down for an appointment, as they don't feel there is any more they can do for me that hasn't already been done... and I'm like... NO ONE HAS DONE ANYTHING! It's a nightmare, and my wife and I are so damn frustrated by the whole thing. The worthless neurologist I saw locally had me stand up, put my arms out and then touch my nose. That was it. He said, "you have a head tremor." I was like, no duh, numbnuts, why can't I walk without a cane? He had no answers for that or for any of the other troubling issues that have plagued me since this all began. He dared to suggest I was a drug seeker, and then put me on gabapentin and tramadol. I was livid with his "care" of my case, so I demanded the referral that I speak of at the end of this post. My wife suggested I post up my information to some neurology boards to see if any of it sounds familiar to someone else. Now that you have an idea about what I'm dealing with... here's how I got there...
For many years, at least 15, I had a weird issue crop up every day. I'd develop a mild fever every afternoon, almost like clockwork. It would start up about 1:00 in the afternoon, and slowly climb until about 5:00. By 7:00 it would break. For the most part, it never got above 99.5. Just enough to make me feel ick, but not enough to really consider it much more than a nuisance. My doc wasn't too worried about it, so we never did anything to track the cause. In 2007, I was diagnosed with juvenile diabetes at the age of 34. A year later, I was diagnosed with a second immune system disease called hashimoto's thyroiditis. I was told I had a hyperactive immune system, and it was attacking some of my organs.
About 2 years ago, something changed. The temperature unexplicably started climbing. First, it went up to 100 degrees, then 100.5, then 101 over a period of 4 months. By the time it got to 100.5, my doctor decided it was time to do something. She sent me to see an infectious disease specialist. He did a ton of blood tests, and I was shocked to find out I had antibodies for diseases I never knew I had been exposed to, including Rocky Mounted Spotted Tick Fever and the Epstein-Barr virus (the virus that is most responsible for the development of MS which is of great concern to me now).
He ended up sending me for nasal surgery, which went well, but lead up to the most hellish experience of my life. I developed excrutiating pain in the back of my head at the point it meets the neck. A month after the pain started, 2 ER visits and 2 MRI's later, they could finally see that I had developed an infection of the bones of the skull and first vertebra called osteomyelitis. My surgeon said that it was very serious, and if it wasn't treated immediately, could spread to the spine and brain very quickly. He let me go home so I could pick up my wife and drop my car off, and my wife drove me straight back for admission to the hospital. I was only in for 8 days, but I was off of work until Feb 1st, and even then I could only work half days because of the hyperbaric treatment schedule.
In the months that followed, the pain reduced significantly, but never completely went away. I was still on oxycodone for the pain. In August of last year, I was referred to a neurosurgeon to see if they could find out why the pain was still present. He did a CT and 6 standing x-rays. A month later, he told me he couldn't find anything and sent me to a physical care specialist. That doctor sent me to physical therapy. When I started PT in Sept of last year, I was taking 2 oxycodone a day to help get to sleep. I wasn't really experiencing "pain" per se, and that was probably why I wasn't really taken very seriously. I didn't describe it as pain, but as moderate to severe discomfort. By the time I stopped going to PT, it had gone from being occasional discomfort that I could tolerate most of the day, to being a moderate pain that never reduced or went away. As a result, I am now on up to 4 oxycodone a day, and take morphine 3 times a day.
Something else started during PT... the head tremor. It started out as a mild head tremor, focused where the damage in the neck was, to a head tremor and tremors and spasms of the arms and shoulders. I now have occasional (which means most of the time anymore) problems walking and with my speech. I never stuttered before in my life until now. Just to be totally open, I had prior to this experienced a head tremor once during a low blood sugar episode. It was short lived, and I never thought about it again until I developed the constant head tremor. If I'm going to be on my feet for more than just a short walk (less than 50 feet), I require a cane.
Some other issues I've had for years include: weird cramping, especially in the intercostal muscles (in the ribs), abdomen and sometimes the thighs. These aren't just regular cramps, they are super hard cramps that hurt worse than any cramps I'd ever had before, and the pain lingers for days from the damage they cause. I also have tingling in the fingers on both hands, and weird sensations in my shoulders, upper arms and thighs. I also suffer from fatigue, sleep apnea, insomnia, hearing difficulties (I actually have really good hearing according to hearing tests, I was told my brain has issues recognizing the input I receive from my ears, especially in noisy situations). I also have high blood pressure, high cholestorol and water retention.
That's it, that's the summary of my medical ills to date. Because of my issues with walking/stability, I have been forced to medically retire from my career as a law enforcement officer. I was a cop for 11 years. I have little hope of being able to ever return to active duty again. At this point, I have little hope of being able to work outside of the home. I can't drive while medicated, so my options are very limited. If a doctor were to tell me tomorrow that I have cancer, at least I'd have something tangible to call this. It's a nightmare not knowing. Disability denied my claim because they don't have sufficient information or diagnosis to be able to make a conclusion (it's being appealled). I've seen 2 neurosurgeons and a neurologist, and so far I've had more blank expressions than answers. The first neurosurgeon told me he couldn't find anything wrong, and the second told me he's never seen this before. I think the worst part was the neurologist suggesting I was a drug seeker. I blew up on him, and told him "If you damn doctors would do your jobs, I wouldn't need to be on medications." I never asked to be put on narcotic pain meds, my doctors made those choices for me. If I could come off of them today, I'd love to. I fear becoming hooked on them.
I have one last hope left now that Mayo has refused to see me. I have the appointment I got after I demanded a referral from the worthless neurologist here in town. I have an appointment in July at the movement disorders clinic at Barnes Jewish Hospital in St Louis. We are praying they can give us some answers, instead of just blindly throwing more medications at me.