chris25370
New member
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.
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.