Piedoctor
Member
- Joined
- Apr 15, 2015
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Dallas
Good evening all -
I have passively monitored this forum for a number of months now, learned a lot, and generally tried not to make too many assumptions. I have also done a lot of research about this disease - mostly driven by the symptoms that I have had for the last few months, but also out of interest in the disease and how little is known about it. I am certainly not here to waste anyone's time, and I greatly appreciate the time each or any of you take to read this. I am not looking for answers here either, mostly just to put out some feelings, fears, and frustrations that I believe might be best understood in a forum like this one.
I am not sure whether my symptoms started last February with some tightness in my chest and breathing difficulty (which was diagnosed as asthma - though it seemed peculiar as I have been an athlete all my life and asthma onset at 36 seemed odd). Regardless, that did not manifest itself into anything more serious, but also didn't resolve. I have still been able to run, swim, ride my bike just like I always have, though my top end seems to be limited a little bit more.
If this was not the first symptom, I would say the first thing I noticed was some stiffness in my dominant hand in December of 2014. Since then, the dominant hand has continued to show symptoms, with the first noticeable wasting (though apparently only to me) of the adductor policis muscle appearing in February. There has been no corresponding loss of strength, but my handwriting has gotten worse. I am still able to lift weights and do all the normal day to day things. I recently got a nerve conduction study and EMG done on that arm which were both clear. Ironically, in the week since I got those studies done, I have noticed the same atrophy on my left hand. Now both thumbs feel stiff, but again, there has been no loss of strength.
Also in December I started noticing fasciculations pretty much everywhere. They were in my legs, arms, trunk, even across my head. I could feel them and see them, and they were fairly constant, and while they did migrate a good bit, they were also most prevalent in a couple of areas - my left calf and my right trapezius.
In the past few weeks, I have noticed that I have what seems like difficulty swallowing saliva. And just in the last few days, difficulty swallowing food - it seems like small parts sit at the back of my throat. Interestingly, it seems like only one side of my throat is effected - it seems to correspond with some difficulty that I have with chewing on that side of my mouth.
All these things have been real treats (now to the frustrations and fears part). I have been checked out by my PC and the neuro who ordered the EMG (due to my concerns, not hers), as well as having the NCS/EMG done by another neuro. None of them has expressed any concerns about my physical exam, and as I said, the tests have all been clear. It is so strange to feel this way - and by strange I mean terrifying - and have those feelings appear to not be validated in any way.
Anyway, like I said, I just needed to vent a little. While my own research seems to indicate that there is at least some cause for concern on my part, my own family is getting a little tired of hearing about it since there is nothing they can see or decipher and the docs are all saying that everything looks good.
I so appreciate this community. As I said, it has been an excellent resource for me and again, I don't wish to waste anyone's time. I am just scared of the symptoms I am feeling - knowing full well what the Stickies say. I appreciate the kind ears (eyes) that I have seen on display here and have all of you that are actually living with this disease and your families in my daily prayers.
I have passively monitored this forum for a number of months now, learned a lot, and generally tried not to make too many assumptions. I have also done a lot of research about this disease - mostly driven by the symptoms that I have had for the last few months, but also out of interest in the disease and how little is known about it. I am certainly not here to waste anyone's time, and I greatly appreciate the time each or any of you take to read this. I am not looking for answers here either, mostly just to put out some feelings, fears, and frustrations that I believe might be best understood in a forum like this one.
I am not sure whether my symptoms started last February with some tightness in my chest and breathing difficulty (which was diagnosed as asthma - though it seemed peculiar as I have been an athlete all my life and asthma onset at 36 seemed odd). Regardless, that did not manifest itself into anything more serious, but also didn't resolve. I have still been able to run, swim, ride my bike just like I always have, though my top end seems to be limited a little bit more.
If this was not the first symptom, I would say the first thing I noticed was some stiffness in my dominant hand in December of 2014. Since then, the dominant hand has continued to show symptoms, with the first noticeable wasting (though apparently only to me) of the adductor policis muscle appearing in February. There has been no corresponding loss of strength, but my handwriting has gotten worse. I am still able to lift weights and do all the normal day to day things. I recently got a nerve conduction study and EMG done on that arm which were both clear. Ironically, in the week since I got those studies done, I have noticed the same atrophy on my left hand. Now both thumbs feel stiff, but again, there has been no loss of strength.
Also in December I started noticing fasciculations pretty much everywhere. They were in my legs, arms, trunk, even across my head. I could feel them and see them, and they were fairly constant, and while they did migrate a good bit, they were also most prevalent in a couple of areas - my left calf and my right trapezius.
In the past few weeks, I have noticed that I have what seems like difficulty swallowing saliva. And just in the last few days, difficulty swallowing food - it seems like small parts sit at the back of my throat. Interestingly, it seems like only one side of my throat is effected - it seems to correspond with some difficulty that I have with chewing on that side of my mouth.
All these things have been real treats (now to the frustrations and fears part). I have been checked out by my PC and the neuro who ordered the EMG (due to my concerns, not hers), as well as having the NCS/EMG done by another neuro. None of them has expressed any concerns about my physical exam, and as I said, the tests have all been clear. It is so strange to feel this way - and by strange I mean terrifying - and have those feelings appear to not be validated in any way.
Anyway, like I said, I just needed to vent a little. While my own research seems to indicate that there is at least some cause for concern on my part, my own family is getting a little tired of hearing about it since there is nothing they can see or decipher and the docs are all saying that everything looks good.
I so appreciate this community. As I said, it has been an excellent resource for me and again, I don't wish to waste anyone's time. I am just scared of the symptoms I am feeling - knowing full well what the Stickies say. I appreciate the kind ears (eyes) that I have seen on display here and have all of you that are actually living with this disease and your families in my daily prayers.