Gary Morgan
Member
- Joined
- Mar 19, 2007
- Messages
- 17
- Reason
- Learn about ALS
- Country
- US
- State
- Indiana
- City
- Akron
Scared for me and my family... help please
--------------------------------------------------------------------------------
Hello all, and this is my first post to the forum and I apologize for its length. I hope that you can help guide me through what I beginning to fear may become a reality. Any feedback on this lengthy post would be most appreciated. I am 40 years old.
About 18 months ago I began to notice that both my legs felt week. I first noticed it when pedaling a three wheeled bicycle with my 2 y/o daughter and my then pregnant wife. I chalked it up to being out of shape. In looking back, at about the same time, I noticed my hands were a bit weak and a little achy, and things like ripping up junk mail was tougher than it used to be. I chalked it up to getting old. Both continued to be mildly annoying, but I did not think much of it.
About 12 months ago, I started noticing that my legs would get tingly and numb if I sat on the toilet for more than 5 minutes or so, and that my arms would go numb if I slept on them. Once again, I thought that I must be getting old.
About 3 months ago I was bending down to pick up a beach towel after waterskiing a bit, and fell over in agony. It turns out that I had major back spasms for the first time in my life. After several trips to the chiropractor, xrays and lower back MRI, to identify some mild disc degeneration, I have fully recovered by stretching everyday. (not sure if related, but my theory is that I was using my back to overcompensate for my weak legs)
Over the last 2 months or so, my leg numbness and weakness has gotten much more pronounced (almost constant), and has also included my arms now. I can barely hold my one year old daughter for more than 3 minutes without my bicep muscle becoming agonizingly painful. I also am achy all over (especially the shoulders and forearms) and have started to notice twitchings all over my body. They are not constant, but happen fairly often throughout the day.
I went to my GP two weeks ago and had all the typical blood work done which came back negative. I then went to the nuerologist yesterday and he did an initial evaluation. From what I can tell, I had no gait abnormalities, could stand on my toes and heels and walk fine, and he seemed OK with my other movements (I think). The one thing he mentioned to me were my "brisk reflexes", which I beleive are a symptom of ALS.
His preliminary diagnosis is that I definetely "have some illness". His best guess is Peripheral Polyneuropathy, however he is also considering Myostis and Myopothy, but did not seem to think that these were the cause. When I asked him about the possibility of ALS, he looked up from his notes and indicated that yes, this is something that we should be concerned about given my symptoms. I am scheduled for the neuro-tests next Friday.
In thinking (i.e. worrying myself sick) about this the last 24 hours, looking at my daughters and candidly crying a couple of times, I realize that my leg weakness is really more in my upper legs and my arm weakness is really in my upper arms (biceps primarily) while my numbness is in my lower legs and arms. I ache in my shoulders and both of my arms, but there is little pain in my legs. I do notice that my balance is off a bit and little things take more concentration for me to do. I can do them, but I now have to think about them more- i.e. turning on a light switch while walking. Not sure if this matters or not.
So, I guess my questions are these:
- Thoughts on my symptoms being ALS?
- Does my story sound similar to anyone's experience here?
- What are the neuro-tests going to be looking for to make an ALS diagnosis vs something else like Peripheral Polyneuropathy?
- Any advice on how to cope....
Thanks VERY much for anyone's help as I am REALLY scared right now.
Ray
Ray
Welcome to the forums! I too am new here but have already got loads of information and help from the folks here, and you will too!
Yes your story sounds very close to mine, lost use of most of my right arm and gand, and legs have gotten weaker faster then I want to admit. I was diagnosed with ALS in January but had haved a few years of light hand pain and use, just wrote it off as arthitis or carpel tunnel. After several EMG's and 4 MRI's I found out different.
I am a single male 46 years old and scared alot! Pride has always gotten in my way, and looks like I am going to have to shake that off real soon!
Hang in there buddy, you'll be in my thoughts and prayers!
Gary
--------------------------------------------------------------------------------
Hello all, and this is my first post to the forum and I apologize for its length. I hope that you can help guide me through what I beginning to fear may become a reality. Any feedback on this lengthy post would be most appreciated. I am 40 years old.
About 18 months ago I began to notice that both my legs felt week. I first noticed it when pedaling a three wheeled bicycle with my 2 y/o daughter and my then pregnant wife. I chalked it up to being out of shape. In looking back, at about the same time, I noticed my hands were a bit weak and a little achy, and things like ripping up junk mail was tougher than it used to be. I chalked it up to getting old. Both continued to be mildly annoying, but I did not think much of it.
About 12 months ago, I started noticing that my legs would get tingly and numb if I sat on the toilet for more than 5 minutes or so, and that my arms would go numb if I slept on them. Once again, I thought that I must be getting old.
About 3 months ago I was bending down to pick up a beach towel after waterskiing a bit, and fell over in agony. It turns out that I had major back spasms for the first time in my life. After several trips to the chiropractor, xrays and lower back MRI, to identify some mild disc degeneration, I have fully recovered by stretching everyday. (not sure if related, but my theory is that I was using my back to overcompensate for my weak legs)
Over the last 2 months or so, my leg numbness and weakness has gotten much more pronounced (almost constant), and has also included my arms now. I can barely hold my one year old daughter for more than 3 minutes without my bicep muscle becoming agonizingly painful. I also am achy all over (especially the shoulders and forearms) and have started to notice twitchings all over my body. They are not constant, but happen fairly often throughout the day.
I went to my GP two weeks ago and had all the typical blood work done which came back negative. I then went to the nuerologist yesterday and he did an initial evaluation. From what I can tell, I had no gait abnormalities, could stand on my toes and heels and walk fine, and he seemed OK with my other movements (I think). The one thing he mentioned to me were my "brisk reflexes", which I beleive are a symptom of ALS.
His preliminary diagnosis is that I definetely "have some illness". His best guess is Peripheral Polyneuropathy, however he is also considering Myostis and Myopothy, but did not seem to think that these were the cause. When I asked him about the possibility of ALS, he looked up from his notes and indicated that yes, this is something that we should be concerned about given my symptoms. I am scheduled for the neuro-tests next Friday.
In thinking (i.e. worrying myself sick) about this the last 24 hours, looking at my daughters and candidly crying a couple of times, I realize that my leg weakness is really more in my upper legs and my arm weakness is really in my upper arms (biceps primarily) while my numbness is in my lower legs and arms. I ache in my shoulders and both of my arms, but there is little pain in my legs. I do notice that my balance is off a bit and little things take more concentration for me to do. I can do them, but I now have to think about them more- i.e. turning on a light switch while walking. Not sure if this matters or not.
So, I guess my questions are these:
- Thoughts on my symptoms being ALS?
- Does my story sound similar to anyone's experience here?
- What are the neuro-tests going to be looking for to make an ALS diagnosis vs something else like Peripheral Polyneuropathy?
- Any advice on how to cope....
Thanks VERY much for anyone's help as I am REALLY scared right now.
Ray
Ray
Welcome to the forums! I too am new here but have already got loads of information and help from the folks here, and you will too!
Yes your story sounds very close to mine, lost use of most of my right arm and gand, and legs have gotten weaker faster then I want to admit. I was diagnosed with ALS in January but had haved a few years of light hand pain and use, just wrote it off as arthitis or carpel tunnel. After several EMG's and 4 MRI's I found out different.
I am a single male 46 years old and scared alot! Pride has always gotten in my way, and looks like I am going to have to shake that off real soon!
Hang in there buddy, you'll be in my thoughts and prayers!
Gary
