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Struggling so bad.... anyone with ALS knowledge please

Kaylab3

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I’ve had body wide muscle twitching for over 5 months now. Some days are better some are worse. I also feel like my shoulders are getting more tired as of late. Like a burning feeling. Could this be muscle tension? I can still do everything, but I just feel like they are starting to burn too quickly. I also think about it 24/7. We just packed up our house and I packed over 150 boxes solo without trouble in 4 days. But I keep thinking the burning means I’m going to get this disease any day. This couple with the twitches have me so upset I can even function and know it’s going to ruin my holidays. I saw pcp and he said all clear. I have a neurology app just to be clear and I am so nervous about going I am sick constantly. Please anyway who knows about this weigh in. And if you can help me to answer with question,,,, would I be progressing noticeably over 5 months if I had this disease???
 

Bearcat999

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I'm not a doctor. I lost a brother to ALS and volunteered for the ALS group here in town. Nothing you described indicates ALS onset. And yes, you would notice significant decline in 5 months. You actually notice significant decline in days. Suddenly you can't do things you could before. It comes on that quickly. What you are dealing with is "perceived weakness", not true muscle failure.
 

Kaylab3

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I'm not a doctor. I lost a brother to ALS and volunteered for the ALS group here in town. Nothing you described indicates ALS onset. And yes, you would notice significant decline in 5 months. You actually notice significant decline in days. Suddenly you can't do things you could before. It comes on that quickly. What you are dealing with is "perceived weakness", not true muscle failure.
I am so sorry for your loss bearcat. Thank you for encouragement. My anxious brain is horrible. As a young mom I’m afraid to leave my children and this fear has taken hold. Thank you for responding.
 

suzzeeb

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I've had muscle twitching since summer. If I pay close attention, I pretty much feel them constantly, along with many other symptoms. My doctor says they are benign fasciculations. I finally stopped worrying about it. I'm sure I will find hundreds of other symptoms to worry about in the future, but now I finally realize the twitching is absolutely benign. They just feel weird so it's easy to worry about them - just like the heart PVCs I have on a regular basis - and have had my whole life. I even had an ablation for them, even though the cardiologist said they were benign. I still have them some, and I still have to reassure myself they are not dangerous. I think our bodies just do weird things that most people overlook or don't think much about. We are just more sensitive to body sensations and over focus.
 

Jonatham

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I’m in the same boat. Been assured by a neurologist that it’s benign. It’s so difficult to not have fear. Keeping busy is the best remedy I’ve found. It’s not easy these days, especially, but do what you can.
 
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Kaylab3

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I’m in the same boat. Been assured by a neurologist that it’s benign. It’s so difficult to not have fear. Keeping busy is the best remedy I’ve found. It’s not easy these day, especially, but do what you can.
Yes I’m trying to keep busy. This low lying anxiety just really stinks. Hang in there yourself!
I've had muscle twitching since summer. If I pay close attention, I pretty much feel them constantly, along with many other symptoms. My doctor says they are benign fasciculations. I finally stopped worrying about it. I'm sure I will find hundreds of other symptoms to worry about in the future, but now I finally realize the twitching is absolutely benign. They just feel weird so it's easy to worry about them - just like the heart PVCs I have on a regular basis - and have had my whole life. I even had an ablation for them, even though the cardiologist said they were benign. I still have them some, and I still have to reassure myself they are not dangerous. I think our bodies just do weird things that most people overlook or don't think much about. We are just more sensitive to body sensations and over focus.
Thank you for your response. Our bodies are crazy. I’m tired of paying attention to every sensation. I’m sure it makes it worse. Hang in there!!
 

Walking Circles

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There is an entire facebook page for a syndrome called Benign Fasiculation Syndrome. Basically it's a condition where your muscle twitch constantly, some people get cramping and other symptoms as well. There are many people on the page that have had it for 10 plus years. Personally I've had body wide twitching since around 2011.
 

Jonatham

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I’ve come to accept the twitches in the last couple of days. Now, of course, there’s other things I’m feeling that aren’t sitting well with me. My legs feel unsteady, underneath me, at times, and I have tingling in one hand. Feels like I’m back to square one, as far as being convinced I have something seriously wrong
 

Mandi

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I had ALS fear back in the summer. Every muscle in my body would twitch. I had hand tremors and felt weak. I was also a new mommy so that made my fears worse. After a full blood workup they found a problem with my thyroid. It only showed on the t4 panel. After treatment I feel somewhat better but I still have twitches from time to time. They are worse at night or when I'm sitting for a long time. This fear drove me crazy. I would go to sleep crying and sometimes would cry before getting out of the bed. I knew what the day would bring. Extreme fear and twitches. There is so many other reason for twitches besides ALS. Try not to Google it made me so much worse. Good luck and God bless.
 

Kaylab3

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I had ALS fear back in the summer. Every muscle in my body would twitch. I had hand tremors and felt weak. I was also a new mommy so that made my fears worse. After a full blood workup they found a problem with my thyroid. It only showed on the t4 panel. After treatment I feel somewhat better but I still have twitches from time to time. They are worse at night or when I'm sitting for a long time. This fear drove me crazy. I would go to sleep crying and sometimes would cry before getting out of the bed. I knew what the day would bring. Extreme fear and twitches. There is so many other reason for twitches besides ALS. Try not to Google it made me so much worse. Good luck and God bless.
Thanks mandi! Thyroid problems run in my family. Mine has been tested but I could still have something going on with it. I’m trying to realize it’s been 5 months and my life hasn’t changed other than I’m twitching and anxious so that is comforting. Unfortunately I would be deteriorating by now noticeably. Thank you for your encouragement!!!!
I’ve come to accept the twitches in the last couple of days. Now, of course, there’s other things I’m feeling that aren’t sitting well with me. My legs feel unsteady, underneath me, at times, and I have tingling in one hand. Feels like I’m back to square one, as far as being convinced I have something seriously wrong
I get this with the legs and random tingles. I’m starting to think us folks have over active nervous system. When I was in the deepest part of this hole I was on the als forums and they all said that als is “motor neurons” not sensory neurons so sensory things like tingling and “feeling weird” points away from Als. You got this! Like me your fine just anxious ( I can give better advice than I take obviously)
 

Jonatham

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Thanks mandi! Thyroid problems run in my family. Mine has been tested but I could still have something going on with it. I’m trying to realize it’s been 5 months and my life hasn’t changed other than I’m twitching and anxious so that is comforting. Unfortunately I would be deteriorating by now noticeably. Thank you for your encouragement!!!!

I get this with the legs and random tingles. I’m starting to think us folks have over active nervous system. When I was in the deepest part of this hole I was on the als forums and they all said that als is “motor neurons” not sensory neurons so sensory things like tingling and “feeling weird” points away from Als. You got this! Like me your fine just anxious ( I can give better advice than I take obviously)
You do give good advice. Thanks! Hope you’re doing well.
 

Givethanks82

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I’ve been having the same symptoms for a few months now. Twitching all over body, tingling all over. It’s crazy.
 

hranee

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I've had muscle twitching since summer. If I pay close attention, I pretty much feel them constantly, along with many other symptoms. My doctor says they are benign fasciculations. I finally stopped worrying about it. I'm sure I will find hundreds of other symptoms to worry about in the future, but now I finally realize the twitching is absolutely benign. They just feel weird so it's easy to worry about them - just like the heart PVCs I have on a regular basis - and have had my whole life. I even had an ablation for them, even though the cardiologist said they were benign. I still have them some, and I still have to reassure myself they are not dangerous. I think our bodies just do weird things that most people overlook or don't think much about. We are just more sensitive to body sensations and over focus.
Did your Doc order any blood tests? I have the same symptoms and can feel twitching all over almost constantly if I focus on it. I do not have any other symptoms but my doc wanted to do blood work so I’m freaked out! She was surprised that I said I have twitches every day.
 

Givethanks82

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Did your Doc order any blood tests? I have the same symptoms and can feel twitching all over almost constantly if I focus on it. I do not have any other symptoms but my doc wanted to do blood work so I’m freaked out! She was surprised that I said I have twitches every day.
Don’t freak out. She probably checking for vitamin deficiencies. Have you tried magnesium, vit d, and calcium supplements? Also twitching all over can be anxiety.
Did your Doc order any blood tests? I have the same symptoms and can feel twitching all over almost constantly if I focus on it. I do not have any other symptoms but my doc wanted to do blood work so I’m freaked out! She was surprised that I said I have twitches every day.
Also you probably need to up your water intake. I get twitches all over as well. I noticed when I’m consistent with my vitamins and drink more water they don’t happen as much.
 
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hranee

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I just take a multi vitamin and fish oil. I’ve tried the natural calm magnesium drink—I don’t know if it helps or not, maybe a daily supplement would be better. I am otherwise a healthy 35 yr old. So I try not to let my anxiety control everything but these twitches are annoying and frightening! I think she is also just checking a neurological marker to be thorough....because I have no other symptoms. Although she was surprised to hear I have them every day when at rest. So who knows it seems many people have them daily/with rest.
 

Kaylab3

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I just take a multi vitamin and fish oil. I’ve tried the natural calm magnesium drink—I don’t know if it helps or not, maybe a daily supplement would be better. I am otherwise a healthy 35 yr old. So I try not to let my anxiety control everything but these twitches are annoying and frightening! I think she is also just checking a neurological marker to be thorough....because I have no other symptoms. Although she was surprised to hear I have them every day when at rest. So who knows it seems many people have them daily/with rest.
My doctor took like 12 vials of blood... checked for everything they can check for sinister wise and it all checked out. I don’t have other symptoms either.... mainly twitching. I’ve been really busy the last few and only noticed them a few times. I think it’s our anxiety talking. I’m going on over 5 months now! But they started after a huge anxiety attack. I agree more water—- I know I don’t drink enough!!!
 

HediSlimca

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Hey,

I'm dealing with anxiety and muscle twitching since 16 months, I've had 4 EMG's and I have seen 4 different neurologist, every test wass clean. And despite that, it's still hard for me to believe that these things are begnin but they are. We have to understand that. We have to believe doctors. And most important of all, we must stop searching for the 100%. That simply dosent exist. There's professionals, there's science and there's probabilities. Thing is, that for ALS, most of the cases start with real muscle weakness, not just a feeling, and if it start with twitching, weakness will come very soon. So we are talking about an unsual presentation of an already rare disease. If you serach on the internet, you are going to find bad stories of people having twiching for months before developping weakness but again these are even rarest presentation of ALS. So just stop thinking about it. Odds are pretty heavily in our favor and that without taking any examinations, if you do go to a doctor and he examinate you dan tell you it's nothing to worry about. Then probility that you are sick is REALLY near to ZERO !
 

Surinder86

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I had ALS fear back in the summer. Every muscle in my body would twitch. I had hand tremors and felt weak. I was also a new mommy so that made my fears worse. After a full blood workup they found a problem with my thyroid. It only showed on the t4 panel. After treatment I feel somewhat better but I still have twitches from time to time. They are worse at night or when I'm sitting for a long time. This fear drove me crazy. I would go to sleep crying and sometimes would cry before getting out of the bed. I knew what the day would bring. Extreme fear and twitches. There is so many other reason for twitches besides ALS. Try not to Google it made me so much worse. Good luck and God bless.
How do u feel now dear? Im currently 8 months pregnant and going through these symptoms toms.. and i am an emotional wreck
 

Bearcat999

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How do u feel now dear? Im currently 8 months pregnant and going through these symptoms toms.. and i am an emotional wreck
Remember though EVERYONE gets muscle twitches. So it makes sense that ALS patients would say they have them on and off for months/years. If you have ALS, the true twitching starts AFTER the weakness and it looks like worms under your skin. After my brother died, I did a lot of volunteer work with the ALS society here. The onset is sudden and noticeable. I've personally never met a person who went to the Dr. because of twitching. Nor is it gradual weakness, It is usually one day you can do something and one day you cant. An example is one man I knew was in Florida. One day he started falling constantly trying to walk through the sand. He had been there for a few days before with no issues. It is literally that quick.
 

Surinder86

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Remember though EVERYONE gets muscle twitches. So it makes sense that ALS patients would say they have them on and off for months/years. If you have ALS, the true twitching starts AFTER the weakness and it looks like worms under your skin. After my brother died, I did a lot of volunteer work with the ALS society here. The onset is sudden and noticeable. I've personally never met a person who went to the Dr. because of twitching. Nor is it gradual weakness, It is usually one day you can do something and one day you cant. An example is one man I knew was in Florida. One day he started falling constantly trying to walk through the sand. He had been there for a few days before with no issues. It is literally that quick.
May God Bless you for all the work you have done. Just reassuring us through your comment is a blessing on its own.
 
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