Status
Not open for further replies.

AbCd1234

New member
Joined
Jan 27, 2011
Messages
3
Reason
Learn about ALS
Country
US
State
MI
City
Detroit
I know that this type of question has been asked before, but I can't seem to find answers from PALS. In regards to muscle twitching...do your muscle twitches last all day, every day from the time you get up until you go to bed? As the disease progresses do they get worse or better? Does anything seem to help with muscle twitches (medicine, rest, magnesium)? Can you see and feel the muscle twitches?
Thanks in advance for all answers.

Praying for everyone out there...
 
I know that this type of question has been asked before, but I can't seem to find answers from PALS. In regards to muscle twitching...do your muscle twitches last all day, every day from the time you get up until you go to bed? As the disease progresses do they get worse or better? Does anything seem to help with muscle twitches (medicine, rest, magnesium)? Can you see and feel the muscle twitches?
Thanks in advance for all answers.

Praying for everyone out there...

Every PALS' experience with fasciculations is different because the intensity of UMN and LMN symptoms vary from PALS to PALS. That's the main reason you won't get a consistent answer to questions about fasciculations. In the early stages, they are often so mild that they can't even be felt. For some people, they become more noticeable as the disease progresses. In the late stages of the disease, when muscles become paralyzed, they disappear completely.

And now, a question for you. Why do you seek answers to these questions? If you don't have ALS, our experiences are irrelevant to you. If all you have is muscle twitching -- no clinical weakness, no spasticity, etc. -- it is very unlikely that you have ALS. Muscle twitching is not even considered as a diagnostic factor for ALS, which you've read many times here if you've been searching the site for answers to your questions.

So, why do you want answers to these questions?
 
trfogey, I really appreciate your reply...thanks for responding so quickly. I am asking about the muscle twitching because I have "ALS -type symptoms" and need more information. It is actually much more than muscle twitching (weakness throughout body- mostly legs and upper arms, shaking when holding a gallon of milk or equivalent, trouble with my neck- gets tired and hard to hold up, excessive salvia ect...). It all started with muscle twitching and shaking in legs when wearing heels about 3 months ago and one by one the other symptoms started appearing. I have been to a neuro who said EMG was clear, but that was about 1 week after the twitching started and leg shaking and I was only tested with three needles (one in arm, leg, and foot on the left side).
The reason I am particularly concerned with the muscle twitches is because mine appear to be getting worse and now other concerning symptoms are appearing. I used to only get the twitches at night and now I get them all day and nothing I do seems to relieve them. I was wondering if there was anything out there that helped with the twitching and if PALS had all day progressive twitching. I was also wondering what remedies worked to stop or minimize the twitching since I am sure they are as annoying to you as they are to people BFS or other conditions.
Thanks again for your reply. I really appreciate the strength and guidance of the members in this forum have provided and if it turns out not to be ALS I have decide to help people who do have the disease in whatever way that I can. I feel like if I wasn’t destined to have this disease then I am having symptoms of it so that I could help in some way and I can start this by educating myself so I can try and make a difference for people that do suffer.
A classmate of mine’s dad passed away from ALS and I didn’t understand what it was until now…NOW that I know, whether I have it or not, I am going to do whatever I can to help.
Again, praying for everyone out there...
 
Since you ask, I can't talk, eat, drink, walk more than a few feet, get myself up off of the toilet and my typing is going but the one thing I've never had as a PALS is twitching. The only rule is that twitches or lack of twitches means nothing.
 
trfogey, I really appreciate your reply...thanks for responding so quickly. I am asking about the muscle twitching because I have "ALS -type symptoms" and need more information. It is actually much more than muscle twitching (weakness throughout body- mostly legs and upper arms, shaking when holding a gallon of milk or equivalent, trouble with my neck- gets tired and hard to hold up, excessive salvia ect...). It all started with muscle twitching and shaking in legs when wearing heels about 3 months ago and one by one the other symptoms started appearing. I have been to a neuro who said EMG was clear, but that was about 1 week after the twitching started and leg shaking and I was only tested with three needles (one in arm, leg, and foot on the left side).

What did your neurologist recommend that you do? What did he/she say to indicate what might be wrong with you? Finally, your neuro said that your EMG was clear. Why don't you believe that and stop worrying about ALS?

I can assure you that the additional symptoms you have listed here don't sound like ALS either, especially in how fast they came on and how quickly they spread throughout your body. ALS doesn't work like that. Frankly, they sound as if you are trying to check off items on a checklist that you don't fully understand. And because you don't understand how the items on the list work, your descriptions of the symptoms don't match up with what most PALS experience. You are trying to fit square pegs in round holes, so to speak.

The reason I am particularly concerned with the muscle twitches is because mine appear to be getting worse and now other concerning symptoms are appearing. I used to only get the twitches at night and now I get them all day and nothing I do seems to relieve them. I was wondering if there was anything out there that helped with the twitching and if PALS had all day progressive twitching. I was also wondering what remedies worked to stop or minimize the twitching since I am sure they are as annoying to you as they are to people BFS or other conditions.
Thanks again for your reply. I really appreciate the strength and guidance of the members in this forum have provided and if it turns out not to be ALS I have decide to help people who do have the disease in whatever way that I can. I feel like if I wasn’t destined to have this disease then I am having symptoms of it so that I could help in some way and I can start this by educating myself so I can try and make a difference for people that do suffer.
A classmate of mine’s dad passed away from ALS and I didn’t understand what it was until now…NOW that I know, whether I have it or not, I am going to do whatever I can to help.
Again, praying for everyone out there...

Until your doctors figure out what is causing your twitches, there is no way for anyone to recommend anything to relieve your twitching, provided of course that there is something that will. Until you get a real diagnosis of ALS from a neurologist, our experiences are useless to you as far as the twitching is concerned.

The best thing for you to do is to go back to your doctors and let them do what you are paying them to do -- find out what's wrong with you and direct you to the help you need. The worst thing you can do is to continue along the Internet "research" path. All Dr. Giggle has done for you is to make you frightened and anxious about having a rare disease that it is incredibly unlikely that you really do have. Didn't do you much of a favor, did he?

Good luck to you.
 
I am no PALS but have fasciculations for nearly 4 years. If you noticed them at night at first, that is very good...why did they worsen? I would say because you focused on them and stressed yourself..that was my case. You say you have generalised weakness/fatique, I do not think that is how ALS starts, its focal usually.
To relieve fasciculations, very good are carbamazepines or pregabalin, ask your neuro and try them..I am sure it will help you.
 
Hi, i have read the response to you questions about twitching and ALS. Well, we are all people who don't anything about ALS except by experience. I have had ALS for over 2 years and one doctor told me I had 6 months and another told me to assess every 2 months and make a judgement from that. My twitching goes 24 hours a day and they don't have anything to help. My speech is gone and is centering around my throut. I have cut right to the chase and centers around my throat. Now my confusion is my arms. They are loosing their usage. Doctors have not told me a solid course ALS takes, but for anyone to give uneducated assessment on a disease that has no known course. I have had twitching for over 2 years. The doctor which know more about this disease is best bet. I believe you are on the right path. In Him :razz:
 
I don't think you should worry if you can talk, walk, swallow properly, and you have no clinical weakness. Just enjoy life.
 
Thank you everyone for the responses. Thinking of all of you every day.
 
ABC, you have BFS most likely. Check into the AboutBFS.com, your symptoms and history will match up very well over there, trust me. You just described my leg issues to a "T", twitching, shaky, and all.

Take care

Robynn:-D
 
Status
Not open for further replies.
Back
Top