I've spent the last week calling my neurologists' office to try and have my patient records faxed over to my primary care physician's office. I'm not actually a primary care kind of guy...this is probably because I don't really get sick with the typical things. As I mentioned in my previous post, I didn't have a need for a doctor from 2001-2009. It was only then that my insides decided they wanted to explode. I didn't go into the specifics in the last post, but I had quite the bout with diverticulitis.
Around Memorial Day of 2009, my friend Kerry was scheduled to come in from Dallas. We had plans to see an Astros game and have some great food and drinks. Those plans were thwarted by what started as a fever and some back pain. I'm going to spare you the extremely gross details and let you know that within 24 hours I was just about septic, in a massive amount of pain and my abdomen had become rock hard. I'm not a six-pack kinda guy, more a kegger so this was a tell-tale sign that something was REALLY wrong. While we believed it was a urinary tract infection, it was only after being on an IV of antibiotics without seeing any progress over an eight hour time frame that a CT scan was performed. Then we saw what had been making me feel so crappy: an abscess about the size of a tennis ball on my large intestine. In addition I had three perforations that were leaking the toxic mess of a large intestine into my abdominal cavity.
I was rushed over to a nearby hospital where I spent a week in recovery. A drain was run through my back to treat the abscess and I was on a diet of NOTHING for a week. Pretty quick way to lose 20 lbs....don't suggest it.
The next six months were spent living with diverticulitis - watching what I was eating, taking fiber supplements, drinking a LOT of water. I had an infection in my large intestine that was not clearing up and it had now spread to my bladder. The infection had punched a hole in the intestinal wall and joined my bladder to it. Essentially, I now had a UTI in addition to the diverticulitis. I saw more specialists who then ran cameras into every place that could give them a view of the damage being done. Come September, I had made the decision to have surgery to remove the infected intestine and part of my bladder.
I woke up in recovery and was moved to the ICU. The surgeon told me the moment I woke up, "Things were a little worse than we thought in there. We had to remove the last foot of your intestine and we cut out the scar tissue from your bladder." Another week in the hospital and 20 lbs. lighter, I was eventually released.
As you can see, I'm no stranger to pain. But back to my first paragraph...my neurologist mailed me the results from my EMG tests. It really just looks like an excel spreadsheet with lots of anatomical jargon and numbers next to it. I'm not sure my PCP will understand it all, but it will help him know what I'm going through and understand that I'm not just whining when I say I need something for anxiety, sleep and pain!!
The "preliminary" impression from my nerve conduction study and muscle stimulation tests read like this:
"Normal nerve conduction study, absent bilateral H wave." This tells you a little more about the "shock and poke" tests that I have had done a couple of times.
If you read right above where it describes F-waves, it tells what an absent H-wave means - "The H-reflex is useful in the diagnosis of S1 and C7 root lesions as well as the study of proximal nerve segments in either peripheral or proximal neuropathies. Its absence or abnormal latency on one side strongly indicates disease if a local process is suspected. Much controversy remains, however, on whether its absence bilaterally in otherwise asymptomatic individuals is of any clinical significance." Since I have it bilaterally, and I'm symptomatic, the last sentence is pretty much null and void. Essentially there is nerve damage and indicators for a nerve disease.
The rest of my study reads like this:
"Electrophysiologic findings suggest motor neuronopathy based on EMG examination including diffuse spontaneous activity and chronic neurogenic patteren were noted in tested muscles of both lower extremities and left upper extremity. " I understand this to mean that I have random signals being read during this testing; one of my feet went into some spontaneous twitching for 20 seconds or so. This was not from my nerves being shocked, this was all on its own.
This link defines neuronopathy if you scroll down to "classification"
Lastly, the report reads: "There is no electrophysiological evidence of myopathy."
This link defines myopathy. Essentially, I don't show signs of muscle disease.
I also failed to mention that I've had a spinal MRI to look for narrowing of the spinal column that would possibly caused nerve issues. That one came back normal as well :-)
So, as you can see I prefer to be an informed patient. I've spent four years in college attaining a bio/neurobio degree and what do I have to show for it? Being able to read this stuff and understand 95% of it!!!
Here are some links that I've been researching, you can just click on the colored words and it will take you to what I'm talking about.
This is Charcot Marie Tooth Association website. It's a great place for information, the sharing of stories and general time sucking!
One thing I learned here is that there are a lot of medications that make the progression worse. Under the Moderate to Significant Risk Category is: Metronidazol *risk with extended use (this is used to treat intestinal infections). I was prescribed this after my first hospitalization from diverticulitis. I began taking this in June 2009 and the last time I filled it was 12.12.09 (I still have the bottle and a lot of the pills here). Under the Negligible or Doubtful Risk is: Sulphamethoxazole. The last time I filled this was March 2010. This is used to treat urinary tract infections (dealing with the fact that my bladder was still healing as well).
I mention the medications because I honestly don't remember my balance being this bad before the surgery. I thought it was largely in part to the fact that I had my stomach muscles cut apart - but my balance never got better, only worse. We could have unknowingly made things worse :-/
And to close, this is a story where you get to listen to people that live with the disease and there is a slideshow that goes along with it. It can be a little emotional with the 2nd girl who speaks and has a particularly hard time with it.
-LAC
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