Good morning,
I am a 39 year old male with a known history of lyme disease, the symptoms of which have evolved into ALS like symptoms. I am concerned and I feel very alone because I am currently avoiding further workups for reasons that I will describe below. Any thoughts or advice that you can offer me would be greatly appreciated. I will do my best to make my long story concise, but please bear with me as there are a lot of details.
In October of 2013, I was bit by a tick on a hunting trip and contracted lyme disease with all of the typical lyme symptoms including a bullseye rash. It took a long time to diagnose, but I was finally diagnosed by an infectious disease doctor. I took a very long course of antibiotics, and over the course of a year, my symptoms gradually improved and finally completely resolved. Then, in November of 2014 I had a sudden and spontaneous onset of right arm and leg fatigue (not clinical weakness) along with fasciculations in both calves and an intermittent difficulty eating and swallowing due to mouth and tongue fatigue.
I saw a neurologist and after a brain and C spine MRI, a host of blood tests, and a needle and surface EMG, all of which were unremarkable, I was diagnosed with anxiety and BFS and sent on my way with a 3 week course of antidepressants. At that point, I decided to take the diagnosis at face value, and use the time with a long workup and clean diagnosis to pursue life insurance and a long term care insurance policy to protect my wife and young children in the event that it ended up being anything more sinister. I was fortunately approved for a life insurance policy, but will not be able to secure long term care insurance until December because they wanted to see a year of history with no doctor visits or medical issues. Because of this, I am avoiding doctors’ visits as long as I can, and as long as my symptoms don’t progress notably. Once insurance is in place (or if my symptoms progress significantly), I will seek a follow-up with my neurologist.
Since that time, my symptoms have very gradually progressed. It seems to be very slow moving, but it also seems that it never gets better, only very gradually worse. Functionally, I am still able to bound up stairs two at a time, work a full day in a demanding job, and care a toddler and a baby, but it is getting progressively harder to do so. Since my neurologist visit, I have noticed profound atrophy in the intrinsic muscles between my lateral 3 toes. These 3 toes on each foot are completely paralyzed and flaccid. I couldn’t move them if I wanted to. I also have some mild atrophy in the intrinsic muscles between my lateral fingers, but my grip strength and hand function seems to be mostly unaffected. I have cramps and spasms in my feet and both calves from time to time, and when I yawn I have flexor spasms in my biceps and clonus in my right forearm and abdominals. My right arm and leg still feel weak and fatigued, though other than my toes, there is no clinical weakness. By the end of the day, it feels like I have run a marathon with my right leg and my left feels normal. The fasciculations remain primarily in my calves, but I have also had them from time to time in my shoulders, abdominals, feet and hands. Also, my speech hasn’t changed where anyone would notice it, but I do have to be more conscious and deliberate to articulate well. Does this sound to you like ALS, or more like something else?
I’ll leave it at that for now. Do any of you have any thoughts or suggestions? Do any of you know of anyone whose ALS onset in this very gradual way? Thank you in advance for your feedback and advice.
I am a 39 year old male with a known history of lyme disease, the symptoms of which have evolved into ALS like symptoms. I am concerned and I feel very alone because I am currently avoiding further workups for reasons that I will describe below. Any thoughts or advice that you can offer me would be greatly appreciated. I will do my best to make my long story concise, but please bear with me as there are a lot of details.
In October of 2013, I was bit by a tick on a hunting trip and contracted lyme disease with all of the typical lyme symptoms including a bullseye rash. It took a long time to diagnose, but I was finally diagnosed by an infectious disease doctor. I took a very long course of antibiotics, and over the course of a year, my symptoms gradually improved and finally completely resolved. Then, in November of 2014 I had a sudden and spontaneous onset of right arm and leg fatigue (not clinical weakness) along with fasciculations in both calves and an intermittent difficulty eating and swallowing due to mouth and tongue fatigue.
I saw a neurologist and after a brain and C spine MRI, a host of blood tests, and a needle and surface EMG, all of which were unremarkable, I was diagnosed with anxiety and BFS and sent on my way with a 3 week course of antidepressants. At that point, I decided to take the diagnosis at face value, and use the time with a long workup and clean diagnosis to pursue life insurance and a long term care insurance policy to protect my wife and young children in the event that it ended up being anything more sinister. I was fortunately approved for a life insurance policy, but will not be able to secure long term care insurance until December because they wanted to see a year of history with no doctor visits or medical issues. Because of this, I am avoiding doctors’ visits as long as I can, and as long as my symptoms don’t progress notably. Once insurance is in place (or if my symptoms progress significantly), I will seek a follow-up with my neurologist.
Since that time, my symptoms have very gradually progressed. It seems to be very slow moving, but it also seems that it never gets better, only very gradually worse. Functionally, I am still able to bound up stairs two at a time, work a full day in a demanding job, and care a toddler and a baby, but it is getting progressively harder to do so. Since my neurologist visit, I have noticed profound atrophy in the intrinsic muscles between my lateral 3 toes. These 3 toes on each foot are completely paralyzed and flaccid. I couldn’t move them if I wanted to. I also have some mild atrophy in the intrinsic muscles between my lateral fingers, but my grip strength and hand function seems to be mostly unaffected. I have cramps and spasms in my feet and both calves from time to time, and when I yawn I have flexor spasms in my biceps and clonus in my right forearm and abdominals. My right arm and leg still feel weak and fatigued, though other than my toes, there is no clinical weakness. By the end of the day, it feels like I have run a marathon with my right leg and my left feels normal. The fasciculations remain primarily in my calves, but I have also had them from time to time in my shoulders, abdominals, feet and hands. Also, my speech hasn’t changed where anyone would notice it, but I do have to be more conscious and deliberate to articulate well. Does this sound to you like ALS, or more like something else?
I’ll leave it at that for now. Do any of you have any thoughts or suggestions? Do any of you know of anyone whose ALS onset in this very gradual way? Thank you in advance for your feedback and advice.
