kpfirefighter
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Hey Aly My first two are twins! But your still doing good with 4 under 7!
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kpfirefighter
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you too Aly thank you!
kpfirefighter
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Hey Aly or Al, Hate to bother you but had some questions. How early can a EMG pick up nerve damage? My primary Doctor is only a primary doctor and not a Neuro. Still he thinks i dont need to see a Neuro cause his basic exams dont really point that way. But how much can a basic exam really show with ALS? I mean i can walk on my heals and toes fine he says all my muscle feel strong. But describing how I feel is hard. I know I have something going on with my left side. My muscles do feel a little weak without getting much better but not to the point of limiting activities. I still feel uncordinated with my left hand. its hard to grasp something light like my wallet! I really keep a good eye on my health unlike my friend that was just diagnosed and fading everyday it seems! What would you guys do in my situation? should I get a EMG or just take my doctors advice and quit being such a wuss! Any words from anybody would be fine sorry for the novel i wrote!
Alyoop
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Well, i just took myself off and had an EMG. An EMG can pick up nerve damage before you are aware of it, in some cases. It picked up that I had Carpal tunnel, but I have no symptoms.
If it will help you get peace of mind, then why not.
I will tell you a little story. I hang out with Neurologists and One had fasciculations suddenly start . He was a neurologist who did EMG's. It didnt take long before he had himself all wired up! He was of course fine. Hey they worry and are lucky enough to check it out. On the otherside, is my hubby, who had fasciculations for 18 months, he had no weakness so pushed it all aside without a worry, and they just dissapeared one day!
If you are the type of person who needs reasurrance to get on with life and dont feel quite right trusting your Doctor, then get some tests done, by someone else. Its your body
aly
If it will help you get peace of mind, then why not.
I will tell you a little story. I hang out with Neurologists and One had fasciculations suddenly start . He was a neurologist who did EMG's. It didnt take long before he had himself all wired up! He was of course fine. Hey they worry and are lucky enough to check it out. On the otherside, is my hubby, who had fasciculations for 18 months, he had no weakness so pushed it all aside without a worry, and they just dissapeared one day!
If you are the type of person who needs reasurrance to get on with life and dont feel quite right trusting your Doctor, then get some tests done, by someone else. Its your body
aly
notme
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To define 'weak' think of something like this.
My problems started in my Left hand (I'm left handed) and the first thing I really noticed was my finger literally collapsed when I tried to push the buttons on my car to unlock it. Definite 'weak'. Does that help?
The weakness in my hand preceded the atrophy in that hand by months. As a firefighter, you'd know weak. I was a fire fighter/EMT -- my 'weak' today wouldn't allow me to pick up a med box--if you're able to do your job--I doubt there is any real clinically determinable weakness.
My problems started in my Left hand (I'm left handed) and the first thing I really noticed was my finger literally collapsed when I tried to push the buttons on my car to unlock it. Definite 'weak'. Does that help?
The weakness in my hand preceded the atrophy in that hand by months. As a firefighter, you'd know weak. I was a fire fighter/EMT -- my 'weak' today wouldn't allow me to pick up a med box--if you're able to do your job--I doubt there is any real clinically determinable weakness.
kpfirefighter
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Thank you all very much, that is great info and advice! I think I will get those tests done like you said to ease my mind and hope that nothing is wrong.
kpfirefighter
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Hey Aly and notme thank you for the quick response. Notme that was a good definition of weakness it puts things a little clearer now. I hope all is well with you! Aly i have read a lot of your post's on this forum and you are a caring person with a good heart and patience thank you.
notme
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Hey KP-- If you can manage to go and enjoy your life without worrying yourself sick--then, by all means--do that. It would be my top suggestion.
If you are going to drive yourself crazy worrying--then get the EMG done so you can quit worrying. You're a firefighter, as I said, I used to be an EMT/Firefighter. With my level of disability and weakness, I could no way possibly do the job anymore. I gave up my EMT license 3 years ago when I first started to get so sick.
Having your friend diagnosed is bound to bother you--it would anyone. I honestly wasn't being snide with my 'weak' comment. I've complained of weakness for quite a while myself--it wasn't until I found that I could no longer do simple things like open a jar, push a spray can, close a patio door--it's not just hard for me--I can't do it at all anymore.
To be honest with you--I'm glad I didn't go pursue a diagnosed earlier than I have--I'm 50 now, and started having issues with my health about 10 years ago. For me, my neuro is just very suspicious of ALS. I might not have it--but if I do--I'm glad I didn't know it a year ago--or two years ago when the muscle weakness and atrophy got really bad. I had two years to think it was something simple with my neck. I don't have the luxury of living in denial anymore, as the neuro has put it on the table and totally ruled out MY self-diagnosis on what it was--cervical spine and lumbar spine issues or pinched nerves in my arms/wrists. I even insisted on an MRI of my neck and back to be sure it wasn't that.
Best wishes and feel better.
If you are going to drive yourself crazy worrying--then get the EMG done so you can quit worrying. You're a firefighter, as I said, I used to be an EMT/Firefighter. With my level of disability and weakness, I could no way possibly do the job anymore. I gave up my EMT license 3 years ago when I first started to get so sick.
Having your friend diagnosed is bound to bother you--it would anyone. I honestly wasn't being snide with my 'weak' comment. I've complained of weakness for quite a while myself--it wasn't until I found that I could no longer do simple things like open a jar, push a spray can, close a patio door--it's not just hard for me--I can't do it at all anymore.
To be honest with you--I'm glad I didn't go pursue a diagnosed earlier than I have--I'm 50 now, and started having issues with my health about 10 years ago. For me, my neuro is just very suspicious of ALS. I might not have it--but if I do--I'm glad I didn't know it a year ago--or two years ago when the muscle weakness and atrophy got really bad. I had two years to think it was something simple with my neck. I don't have the luxury of living in denial anymore, as the neuro has put it on the table and totally ruled out MY self-diagnosis on what it was--cervical spine and lumbar spine issues or pinched nerves in my arms/wrists. I even insisted on an MRI of my neck and back to be sure it wasn't that.
Best wishes and feel better.
kpfirefighter
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hey notme,
Thank you for the replay you put things in perspective pretty well. Im going to listen to my doctor and if he thinks I need to see a neuro I will. I guess there is really nothing much a person can do if this disease strikes them so your all right! just live and what will be will be. It's just is very unfortanate that ALS strikes some of the kindness people out there. Everyone that has replied to me has been supportive and non-judgemental. I hope that I dont trouble you all very much with my concerns and hope you have a great week and if anyone has some advice for me by all means please let me know. And if i can do anything for someone else let me know too!
Thank you for the replay you put things in perspective pretty well. Im going to listen to my doctor and if he thinks I need to see a neuro I will. I guess there is really nothing much a person can do if this disease strikes them so your all right! just live and what will be will be. It's just is very unfortanate that ALS strikes some of the kindness people out there. Everyone that has replied to me has been supportive and non-judgemental. I hope that I dont trouble you all very much with my concerns and hope you have a great week and if anyone has some advice for me by all means please let me know. And if i can do anything for someone else let me know too!
kpfirefighter
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Hey everyone I have another question. When I had blood work done my creatine kinase levels were elavated above 300 and my doctor was a little concerened. After a couple of weeks they came back down to normal. It was the creatine kinase associated with the muscles and not the heart or the brain. So should that be cause for concern? With elevated levels that indicates muscle damage! So does a person with ALS have elevated creatine kinase and if so do they always stay elevated for good or can they go up/down? thank you very much for your time.
Alyoop
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CK levels can jump up after a heavy amount of excersise. You know when you do something that causes you to be stiff and sore the next day..... if you had blood CK done it would be raised. It soon settles back to normal once the bodies normal healing sets in.
I once had a trial patient with a CK of 500. Was sure he must have had a heart attck! He had just done too much gardening. When repeated 2 weeks later it was back to normal. You may have overdone it doing something before the blood test was taken?
Just adding that the CK level is not raised in all ALS patients, only some.
I once had a trial patient with a CK of 500. Was sure he must have had a heart attck! He had just done too much gardening. When repeated 2 weeks later it was back to normal. You may have overdone it doing something before the blood test was taken?
Just adding that the CK level is not raised in all ALS patients, only some.
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