ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 06-12-2015, 10:06 AM #1
waterdog1979 waterdog1979 is offline
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waterdog1979 waterdog1979 is offline
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Default Doctors think I am just a hypochondriac (Moved to ALS Section)

Hello...

I am 35 y/o male that works in finance with a one year old daughter and two and a half year old son. I started having issues typing with my left pinky and ring fingers back in Nov of last year (2014). I now have mild atrophy between my left thumb and pointer fingers with fasciculation’s that are visible, but I can't feel them. Weakness has spread to my right hand, but my bi’s and tri’s on both arms seem to be unaffected at this point besides feeling weak and crampy. I also have body wide fasciculation’s, some I can feel and others I don’t, but my hot spots are my feet and hands which are constant. My face also shakes when smiling and my tongue shakes when I open my mouth. My throat has been sore with tons of drainage, and I feel a lump in my throat most days. My body cramps and twitches all of the time, and I get tired very easily. If I go for a walk, the next day I feel awful. I have had an EMG which showed fibrillations, insertional activity and positive f waves in my left hand all of which were +1. The neuromuscular specialist I saw blew me off, because she thought I was too muscular. But, I feel like both of my hands lose that much more ability every day. As I type this, both hands are shaking and are having major coordination issues. My legs are sore and shake constantly as well along with other body parts. Besides that, all of my muscles will fatigue and quiver with little exertion. I have had blood test for everything under the sun, but nothing has come back positive except I was at a 1/160 titer for autoimmune antibodies which didn’t bother my neurologist. I have also had an MRI which was negative for MS. I have another appointment with a new neurologist on the 22nd of June, but I assume it will still take a while to get a new EMG ordered. If I look up my symptoms, Dr. Google says I have ALS or something similar. I am not saying I have ALS, but I can’t think of many other things that could produce the same symptoms. I know forums aren’t where you come for a diagnosis, but I was hoping there might be someone who has had a similar experience and can provide some insight.

I feel like my symptoms just keep getting worse, but the two neurologists I have seen think I should just exercise more and try to relax. Unfortunately, I haven’t been able to work out in months without feeling like I just raced a marathon. Believe me, shaking while lifting weights isn’t the best combination. For now, I am just waiting for something bad enough to happen that someone will take me seriously. I just wish a doctor would listen without bias. I have a good job, great kids, and a wonderful wife. I am not sure why a doctor would believe I want to spend thousands on an MRI, EMG, and other tests just for fun. I am very frustrated to say the least.

Thanks for taking the time to read my post.

~Waterdog1979
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ger715 (06-12-2015)

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Old 06-12-2015, 11:05 AM #2
ger715 ger715 is offline
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ger715 ger715 is offline
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Originally Posted by waterdog1979 View Post
Hello...

I am 35 y/o male that works in finance with a one year old daughter and two and a half year old son. I started having issues typing with my left pinky and ring fingers back in Nov of last year (2014). I now have mild atrophy between my left thumb and pointer fingers with fasciculation’s that are visible, but I can't feel them. Weakness has spread to my right hand, but my bi’s and tri’s on both arms seem to be unaffected at this point besides feeling weak and crampy. I also have body wide fasciculation’s, some I can feel and others I don’t, but my hot spots are my feet and hands which are constant. My face also shakes when smiling and my tongue shakes when I open my mouth. My throat has been sore with tons of drainage, and I feel a lump in my throat most days. My body cramps and twitches all of the time, and I get tired very easily. If I go for a walk, the next day I feel awful. I have had an EMG which showed fibrillations, insertional activity and positive f waves in my left hand all of which were +1. The neuromuscular specialist I saw blew me off, because she thought I was too muscular. But, I feel like both of my hands lose that much more ability every day. As I type this, both hands are shaking and are having major coordination issues. My legs are sore and shake constantly as well along with other body parts. Besides that, all of my muscles will fatigue and quiver with little exertion. I have had blood test for everything under the sun, but nothing has come back positive except I was at a 1/160 titer for autoimmune antibodies which didn’t bother my neurologist. I have also had an MRI which was negative for MS. I have another appointment with a new neurologist on the 22nd of June, but I assume it will still take a while to get a new EMG ordered. If I look up my symptoms, Dr. Google says I have ALS or something similar. I am not saying I have ALS, but I can’t think of many other things that could produce the same symptoms. I know forums aren’t where you come for a diagnosis, but I was hoping there might be someone who has had a similar experience and can provide some insight.

I feel like my symptoms just keep getting worse, but the two neurologists I have seen think I should just exercise more and try to relax. Unfortunately, I haven’t been able to work out in months without feeling like I just raced a marathon. Believe me, shaking while lifting weights isn’t the best combination. For now, I am just waiting for something bad enough to happen that someone will take me seriously. I just wish a doctor would listen without bias. I have a good job, great kids, and a wonderful wife. I am not sure why a doctor would believe I want to spend thousands on an MRI, EMG, and other tests just for fun. I am very frustrated to say the least.

Thanks for taking the time to read my post.

~Waterdog1979

Have any of your doctors looked into Parkinson's or Parkinsonism Disease? My brother does not have full blown Parkinson's but does have Parkinsonism; which can eventually go into full Parkinson's.


Gerry
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waterdog1979 (06-15-2015)
Old 06-15-2015, 07:55 AM #3
waterdog1979 waterdog1979 is offline
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waterdog1979 waterdog1979 is offline
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Have any of your doctors looked into Parkinson's or Parkinsonism Disease? My brother does not have full blown Parkinson's but does have Parkinsonism; which can eventually go into full Parkinson's.


Gerry
Gerry,

Thanks for your reply. I think with the mild atrophy, twitches, and fatigue it pointed doctors away from Parkinson's and similar diseases. But, it would probably be good to look into it.

-Shannon
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