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Old 02-04-2015, 05:24 PM #1 (permalink)
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Join Date: 2015
City: Cypress
State: TX
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Posts: 4
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Default More lyme or ALS? Could I really be that unlucky?

Good afternoon. I have been reading over this forum and lurking in the background for quite some time now. I have read the stickies and I have scanned many, if not all of the forum posts in this category over the past month or so. I finally had some time and wanted to see if I could get an answer to a question or two.

First, a little background on me and my symptoms: I was but by a tick on a hunting trip over a year ago. I was diagnosed with lyme disease after several months of puzzling symptoms including, fever, malaise, body aches, night sweats, fatigue, and photophobia in my right eye. I sought out a lyme specialist in Dallas and began treatment shortly thereafter. Over the course of the past year and a half, I have taken a plethora of antibiotics of all shapes and sizes and a whole host of herbal supplements. Little by little, I have been getting better and my symptoms have all been resolving. In fact, I can say that 99.9% of all of my original lyme symptoms have disappeared. I am set to stop antibiotics in a little over two weeks. WooHoo!

All was going really well until November, when I noticed that my right leg and right arm felt really tired all of the time. I could do anything that I could before, it was just a little harder. I could climb 5 flights of stairs, but my right leg felt like I had climbed 20. I could do a pull-up, but it felt like I had done 20 with my right arm. Being concerned, I saw my pcp who ordered a brain MRI, ran some blood tests and referred me to a neurologist. All of the tests came back negative for anything.

I met with the neurologist on Dec 15th, at which time, my symptoms had intensified. While I didn't have foot drop, and could walk on my heels, it felt like I had to work extra hard at keeping my foot level when walking, and I favored my left leg when standing. Also, I had begin to have noticeable fasciculations in my calves, quads, and occasionally in my R shoulder. The neurologist re-read the brain MRI, took more labs, ordered a c-spine MRI, and a EMG, all of which again came back negative.

I know that I should be celebrating the negative EMG, but since that time, my symptoms have continued to progress. Again, there is no huge deficit in strength at this time, but I do feel as if my hands (especially my 5th digits) are slightly weak and clumsy. I have intermittent cramps in the muscles in my hands and in my calves, and the fasciculations continue on. They are particularly bad at night. I also have started noticing that my mouth and tongue get fatigued when eating a particularly chewy meal like steak or crunchy lettuce.

From everything that I have read on this site, ALS typically presents with profound muscular weakness or paralysis in one limb, or with slurred speech. My question is this: Prior to the drastic symptoms that are the hallmark of ALS, did any of you notice anything like I am mentioning? Was there mild weakness, trace hand clumsiness, or fatigue in chewing some meals, or was it abrupt paralysis.

I am a neurologic physical therapist by trade, and I have treated people with many neurologic diseases including one with very progressed ALS, but I have never had the opportunity to work with someone newly diagnosed. Because of this, I know a lot about neurology, but there is a big gap in my knowledge. I would love for this to be just another manifestation of lyme disease, but my lyme specialist doesn't think so. Any insight that you all can provide would be greatly appreciated.
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