cirruslewis
New member
- Joined
- Sep 1, 2009
- Messages
- 7
- Reason
- Learn about ALS
- Country
- CA
- State
- Quebec
- City
- MOntreal
This is my first post. I hope I am using this forum properly... (sorry if my English is average, this is not my mother tongue).
Where to start ?
I am 40 and have two children.
My father was diagnosed with *** in May (he has the random, not the inherited type).
From then, I searched the Web to understand his condition and offer my support (as an aside, I can't talk of any of the issues below with him, he just won't talk about ***). Evidently, I stumbled on the *** symptoms since I had been twitching before in the calves, but never made a big deal out of it (don’t know for how long I have been twitching though, but I would believe it was for months).
Anxiety came along and within days I found myself twitching from everywhere (arms, legs, forehead, shoulders, stomach, etc.) I get the buzzing/vibrating, pins and needles, parasthesia, etc. My calves twitch badly 24/7.
I saw a neuro in June and he performed an EMG (also the test with needles). All good. He said the fasics were BFS.
I was so anxious at the time and relieved by the diagnosis that I did not ask him a great deal of questions.
I went on thinking the fasics would disappear and I could go on with my life. Wrong ! Anxiety was still there. A few weeks later, I started consulting with a psychologist to address the anxiety.
To help me overcome anxiety, I eventually went back to a collegue of the first neuro I saw and she completed a thorough clinical exam. She was very reasssuring and told me I had BFS, not to worry about it and that I would certainly die of something, but not of ***. This was in early July.
From then, I still twitched a lot, but I was feeling more confident about BFS.
However, in the last two weeks, I developed a weird feeling in my right calf (which is the one twitching the most and, quite strangely, the bigger and more toned of the two).
chris_uk posted a thread on this board a while back in which he was describing similar symptoms :
"Over the past 6 months my leg is steadily getting worse for me to walk on, i just dread walking and feel so nervous about walking anywhere. When i walk i am ok for about the first 5 minutes then the weird feeling set in. Its all in my right leg where the twitching is constant, i get a really really sore calf after about 5 minutes of walking. I can still run and walk fast but then my whole leg starts to ache around the calf and knee area.
So anyway when i walk for about 15 minutes my calf is really sore and leg is aching, if i stop for maybe a minute, its then ok for about a few minutes then will go all achey / sore again. Is this weakness?
When i come home from my walk (i try to walk 15 mins a night now) i can still run upstairs but its more painful. I am at my best when i have rested it for a bit but it always comes on."
As Chris had put it, I feel pain and fatigue in the right calf when walking for a few minutes (as if the muscles were pulled). Sometimes the calf will become contracted. Sometimes the feeling is in my kee (or behind my knee), sometimes directly in my calf muscle. When I wake up in the morning and am sitting at my desk, my knee area (and the back of my knee and upper portion of my calf) feels numb. I was a very fit person. I can still run a couple of miles, but will end it in pain. It is for some reason less bothersome when I play hockey.
The thing that worries me the most is that it is also very uncomfortable to drive my car. I can push the gas/break pedal w/o problems, its just that my calf muscles get so tensed that I realized recently I am using the cruise control whenever I can to rest my calf. When I rest it, the pain and discomfort somehow reduces, but doesn't disappear. That being said, if I have to use the full strenght of my leg for a streneous effort, it is still as strong (at least it is my perception) as the other.
I am sure I don’t have atrophy, but can this be considered by any way, shape or form as some sort of onset of “weakness” ?
I know, I know, you will all say clean EMG no *** (sometimes I wonder if I have done the test too soon), but I am interested in your feedback. Wright, you can use the "in your face" approach with me no problem
Saying weakness is complete inabilty to use the limb is not quite satisfactory, as such weakness would necessarily be progressive. Complete inability would be the end result. For a fit person, I would assume it could take some time before "significant" weakness appears...
Chris, I think you went back to your neuro with these pain/discomfort symptoms. What was his comments/diagnosis on that ? Has the pain/discomfort diminished over time ? I am happy to see that you have now made peace with all of this. What was the tigger point for you ?
Thank you for your time and good luck to all of you with this *** condition. I have empathy for each of you.
Where to start ?
I am 40 and have two children.
My father was diagnosed with *** in May (he has the random, not the inherited type).
From then, I searched the Web to understand his condition and offer my support (as an aside, I can't talk of any of the issues below with him, he just won't talk about ***). Evidently, I stumbled on the *** symptoms since I had been twitching before in the calves, but never made a big deal out of it (don’t know for how long I have been twitching though, but I would believe it was for months).
Anxiety came along and within days I found myself twitching from everywhere (arms, legs, forehead, shoulders, stomach, etc.) I get the buzzing/vibrating, pins and needles, parasthesia, etc. My calves twitch badly 24/7.
I saw a neuro in June and he performed an EMG (also the test with needles). All good. He said the fasics were BFS.
I was so anxious at the time and relieved by the diagnosis that I did not ask him a great deal of questions.
I went on thinking the fasics would disappear and I could go on with my life. Wrong ! Anxiety was still there. A few weeks later, I started consulting with a psychologist to address the anxiety.
To help me overcome anxiety, I eventually went back to a collegue of the first neuro I saw and she completed a thorough clinical exam. She was very reasssuring and told me I had BFS, not to worry about it and that I would certainly die of something, but not of ***. This was in early July.
From then, I still twitched a lot, but I was feeling more confident about BFS.
However, in the last two weeks, I developed a weird feeling in my right calf (which is the one twitching the most and, quite strangely, the bigger and more toned of the two).
chris_uk posted a thread on this board a while back in which he was describing similar symptoms :
"Over the past 6 months my leg is steadily getting worse for me to walk on, i just dread walking and feel so nervous about walking anywhere. When i walk i am ok for about the first 5 minutes then the weird feeling set in. Its all in my right leg where the twitching is constant, i get a really really sore calf after about 5 minutes of walking. I can still run and walk fast but then my whole leg starts to ache around the calf and knee area.
So anyway when i walk for about 15 minutes my calf is really sore and leg is aching, if i stop for maybe a minute, its then ok for about a few minutes then will go all achey / sore again. Is this weakness?
When i come home from my walk (i try to walk 15 mins a night now) i can still run upstairs but its more painful. I am at my best when i have rested it for a bit but it always comes on."
As Chris had put it, I feel pain and fatigue in the right calf when walking for a few minutes (as if the muscles were pulled). Sometimes the calf will become contracted. Sometimes the feeling is in my kee (or behind my knee), sometimes directly in my calf muscle. When I wake up in the morning and am sitting at my desk, my knee area (and the back of my knee and upper portion of my calf) feels numb. I was a very fit person. I can still run a couple of miles, but will end it in pain. It is for some reason less bothersome when I play hockey.
The thing that worries me the most is that it is also very uncomfortable to drive my car. I can push the gas/break pedal w/o problems, its just that my calf muscles get so tensed that I realized recently I am using the cruise control whenever I can to rest my calf. When I rest it, the pain and discomfort somehow reduces, but doesn't disappear. That being said, if I have to use the full strenght of my leg for a streneous effort, it is still as strong (at least it is my perception) as the other.
I am sure I don’t have atrophy, but can this be considered by any way, shape or form as some sort of onset of “weakness” ?
I know, I know, you will all say clean EMG no *** (sometimes I wonder if I have done the test too soon), but I am interested in your feedback. Wright, you can use the "in your face" approach with me no problem
Saying weakness is complete inabilty to use the limb is not quite satisfactory, as such weakness would necessarily be progressive. Complete inability would be the end result. For a fit person, I would assume it could take some time before "significant" weakness appears...
Chris, I think you went back to your neuro with these pain/discomfort symptoms. What was his comments/diagnosis on that ? Has the pain/discomfort diminished over time ? I am happy to see that you have now made peace with all of this. What was the tigger point for you ?
Thank you for your time and good luck to all of you with this *** condition. I have empathy for each of you.
