Hello,
Probably the toughest part for me during this whole process was the period of limbo between realizing I had a problem, and knowing what the cause of that problem was. With the type of symptoms I was experiencing, the number of potential causes was staggering. I was told over a dozen types of diseases, viruses, injuries, etc. that were likely culprits.
In the lead were Lyme's Disease, Sarcoidosis, any number of head injuries that I had throughout the years, and multiple sclerosis. (At this point, it was sad to realize that my best case scenario was Lyme's Disease, but I don't think I've ever been bit by a tic.)
I should qualify the head injury bit. I have always been somewhat athletic, and have been a competitive hockey goaltender and foil fencer. In my tenure as a goaltender, I have been hit in the head with pucks, sticks, knees, fists, elbows, goal posts, etc.; sometimes quite violently. There have been times where I had been hit, and felt fuzzy afterwards, making that a real contender.
The scariest of the lot was a tie between Multiple Sclerosis and Sarcoidosis. Sarcoidosis is an auto-immune disease where the cells and inflammation that occurs while fighting disease/viruses remain after the disease/virus is eradicated. This results in granulomas building up in various organs, which cause complications. Although it is rare, there is a chance of Saroidosis being fatal. Unfortunately for me, the roots of my symptoms were most likely in the spinal cord and/or brain, meaning there was a higher likelihood of severe complications if it were Sarcoidosis.
Multiple Sclerosis is a somewhat similar auto-immune disease (albeit in laymans' terms when I say similar.) Rather than the cells and inflammation from the body's immune system remaining and causing granulomas after an immune response, Multiple Sclerosis causes the immune system to attack the myelin sheath, which is a protective covering of the nerves (brain and spinal cord.) Given that my symptoms were most likely rooted in the brain and spinal cord, out of these options, Multiple Sclerosis has an arguably better prognosis.
It was a number of weeks between first noticing a problem and finding the cause. I was thankfully able to see my neurologist within a couple of days of that initial onset of symptoms... but wrangling all of the tests took weeks and weeks. I had MRIs of my entire spinal cord and brain, brain activity tests (of which I can't remember the name, but required probes on my head with tons of ultrasound jelly,) EMG tests, blood tests, etc. I believe it took over a month from the first neurologist visit till my initial diagnosis.
(For anyone not familiar with the lingo, and EMG test stands for sadist doctor who wants to stab you with needles.. I mean Electromyogram. The doctor will perform nerve reflex tests with an electric probe, as well as test nerve connectivity with a series of needle sticks in the muscles and nerves. If your doctor/technician is good at this, it wont be too bad... but it can be quite painful.)
As I had talked about in my previous post, my initial diagnosis was Transverse Myelitis, which was lower down the list of possible culprits. The doctor came to this conclusion after finding lesions on my spinal cord, but not in my brain. I began interferon treatments to stave off further damage to my myelin sheath, and steroids to try and repair the damage done by the initial attacks. The first set of follow up tests (mostly more MRIs... thank god I'm not claustrophobic) found more lesions in my brain, and the diagnosis was modified to Multiple Sclerosis.
Well, I can't really think of a way to succinctly wrap this post up, so I'll just say this; if you are in that period of limbo prior to understanding the root of your symptoms, make sure you do a good amount of research into your possible diagnoses, but keep a clear head and try not to scare yourself. Easier said than done... I know.
Thanks,
Adam
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