notme
Extremely helpful member
- Joined
- Apr 3, 2011
- Messages
- 2,605
- Reason
- PALS
- Diagnosis
- 08/2011
- Country
- US
- State
- Fl
- City
- Orlando
Welcome New Person,
You're here for one of several reasons. You're scared because some symptoms you've had popped up as ALS on Dr. G o 0 g 1 e. Or, perhaps you've already seen a doctor and that doctor has suspicions that have sent you looking for answers.
The Sticky Posts have great information on them if you've read them. I have some other suggested reading for you--read the Memorial forum. Read the gut-wrenching posts by those that have lost their loved one to this dreadful disease.
Remember when you ask questions that are nearly identical to the post below yours that the answer isn't likely to change for you, either.
If you have fears--your first stop is your general doctor. He/she will lead you from there. ALS strikes about 1 in every 100,000 people. It's RARE.
The PALS (people with ALS) that reply to the posts here do so in a variety of means.
Some use one or two fingers.
Others are replying with a device that uses their eyes only--one letter at a time. It can take someone up to an hour to reply to your post.
Some are using a trackball and on-screen keyboard and typing with their feet. Again--often one letter at a time.
Remember that when you post your questions.
We ARE here for support--the caregivers, those with ALS and others that have joined and support the community and are awaiting diagnosis. We have ALL been where you are. BUT--make it easy for us to HELP YOU.
Write your questions clearly. Don't use big blocks of text and abbreviations that you'd use on your cell phone. ALS normally strikes those over 40-50. Many in this age group aren't text literate. Use real words!
Remember, too, that all symptoms don't always mean just one thing is going on. Don't assume--let your doctor do their job.
ALS takes time to diagnose. It doesn't happen overnight--and while you may read stories of people being misdiagnosed--it's not the norm. BELIEVE what your doctor tells you.
So, you have questions.
I'm twitching all over. It all started with ....
While twitching is seen in ALS--it's not an early sign. It happens when the muscle is already dying--and with ALS--you'd have had some level of loss in ALS. Don't worry. Benign Fasciculation Syndrom isn't that uncommon. With no loss of ability, you don't need to panic.
I have pain/stiffness/numbness in....
You're in luck. ALS doesn't cause pain, stiffness and numbness. Those are sensory symptoms. ALS doesn't affect sensory nerves. NO ALS.
I think I have atrophy. I measured my arm/leg and....
First, stop measuring. It's normal to have limbs that aren't exactly the same size. Even if you do[/] have atrophy, it doesn't mean ALS.
My EMG/Neuro Exam was normal but....
There is no "but". With a normal EMG and normal neuro exam in light of the symptoms that sent you to the doctor to have it done to begin with means NO ALS. The EMG would have shown something before you even noticed it as the nerves in the beginning try to compensate and send out little shooter nerves to make muscles continue to work. This process DOES show on an EMG--even before you have symptoms. Again, I'm not saying something can't still be wrong with you--but it's unlikely ALS with normal test results.
I woke up with this with no warning and now I cant...
ALS is fast--but it doesn't cause loss overnight. Some things DO--see your doctor.
I was really sick a month ago and now...
Chances are good that you're dealing with something post-viral. There are a lot of possibilities. The fact that these new symptoms come after an illness actually point away from ALS.
I feel really weak when I ...
Please understand that stamina and weakness are two different things. In ALS--a person might notice that they can no longer turn a key in their car, or push the button on the deodorant can, or they fall when their foot drags the ground. AlS is insidiously progressive. Once lost, that part doesn't come back. It also doesn't 'come and go'. Once something is gone--it's gone for good. Poor stamina, while concerning for you, isn't ALS. See your GP.
If none of the above answer your question, including the stickies--by all means, post and someone here will do their best to answer you. But again, remember, your answers are coming from mostly people that have ALS.
To my knowledge, we don't have a doctor here--and even if there was one--you can't get a diagnosis here--just advice--which is generally going to be If you think something is wrong, please start with your doctor and go from there.
There are numerous diseases that mimic ALS. ALL of those need ruled out before a diagnosis of ALS is given. If you have no loss of ability anywhere--chances are very good that you also don't have ALS--which doesn't mean you can't still be ill--so, again, see your doctor and get a diagnosis.
Good luck to you!
Oh, and if you're wondering--I have no diagnosis. I don't know what's wrong with me--just some crazy things that led me here. Remember, it's NOT ALS until it can't be anything else (Thanks Zaphoon for that great line)
You're here for one of several reasons. You're scared because some symptoms you've had popped up as ALS on Dr. G o 0 g 1 e. Or, perhaps you've already seen a doctor and that doctor has suspicions that have sent you looking for answers.
The Sticky Posts have great information on them if you've read them. I have some other suggested reading for you--read the Memorial forum. Read the gut-wrenching posts by those that have lost their loved one to this dreadful disease.
Remember when you ask questions that are nearly identical to the post below yours that the answer isn't likely to change for you, either.
If you have fears--your first stop is your general doctor. He/she will lead you from there. ALS strikes about 1 in every 100,000 people. It's RARE.
The PALS (people with ALS) that reply to the posts here do so in a variety of means.
Some use one or two fingers.
Others are replying with a device that uses their eyes only--one letter at a time. It can take someone up to an hour to reply to your post.
Some are using a trackball and on-screen keyboard and typing with their feet. Again--often one letter at a time.
Remember that when you post your questions.
We ARE here for support--the caregivers, those with ALS and others that have joined and support the community and are awaiting diagnosis. We have ALL been where you are. BUT--make it easy for us to HELP YOU.
Write your questions clearly. Don't use big blocks of text and abbreviations that you'd use on your cell phone. ALS normally strikes those over 40-50. Many in this age group aren't text literate. Use real words!
Remember, too, that all symptoms don't always mean just one thing is going on. Don't assume--let your doctor do their job.
ALS takes time to diagnose. It doesn't happen overnight--and while you may read stories of people being misdiagnosed--it's not the norm. BELIEVE what your doctor tells you.
So, you have questions.
I'm twitching all over. It all started with ....
While twitching is seen in ALS--it's not an early sign. It happens when the muscle is already dying--and with ALS--you'd have had some level of loss in ALS. Don't worry. Benign Fasciculation Syndrom isn't that uncommon. With no loss of ability, you don't need to panic.
I have pain/stiffness/numbness in....
You're in luck. ALS doesn't cause pain, stiffness and numbness. Those are sensory symptoms. ALS doesn't affect sensory nerves. NO ALS.
I think I have atrophy. I measured my arm/leg and....
First, stop measuring. It's normal to have limbs that aren't exactly the same size. Even if you do[/] have atrophy, it doesn't mean ALS.
My EMG/Neuro Exam was normal but....
There is no "but". With a normal EMG and normal neuro exam in light of the symptoms that sent you to the doctor to have it done to begin with means NO ALS. The EMG would have shown something before you even noticed it as the nerves in the beginning try to compensate and send out little shooter nerves to make muscles continue to work. This process DOES show on an EMG--even before you have symptoms. Again, I'm not saying something can't still be wrong with you--but it's unlikely ALS with normal test results.
I woke up with this with no warning and now I cant...
ALS is fast--but it doesn't cause loss overnight. Some things DO--see your doctor.
I was really sick a month ago and now...
Chances are good that you're dealing with something post-viral. There are a lot of possibilities. The fact that these new symptoms come after an illness actually point away from ALS.
I feel really weak when I ...
Please understand that stamina and weakness are two different things. In ALS--a person might notice that they can no longer turn a key in their car, or push the button on the deodorant can, or they fall when their foot drags the ground. AlS is insidiously progressive. Once lost, that part doesn't come back. It also doesn't 'come and go'. Once something is gone--it's gone for good. Poor stamina, while concerning for you, isn't ALS. See your GP.
If none of the above answer your question, including the stickies--by all means, post and someone here will do their best to answer you. But again, remember, your answers are coming from mostly people that have ALS.
To my knowledge, we don't have a doctor here--and even if there was one--you can't get a diagnosis here--just advice--which is generally going to be If you think something is wrong, please start with your doctor and go from there.
There are numerous diseases that mimic ALS. ALL of those need ruled out before a diagnosis of ALS is given. If you have no loss of ability anywhere--chances are very good that you also don't have ALS--which doesn't mean you can't still be ill--so, again, see your doctor and get a diagnosis.
Good luck to you!
Oh, and if you're wondering--I have no diagnosis. I don't know what's wrong with me--just some crazy things that led me here. Remember, it's NOT ALS until it can't be anything else (Thanks Zaphoon for that great line)