Please advise - anyone with ALS knowledge

[Holls 1505]

Dents and dimples aren't atrophy.. man with ALS told me think of a block of ice that has melted or he said go look up pictures of men from the Holocaust. 

Your twitches got worse from the alcohol. Your body is on high alert and the alcohol isn't helping that. The shock, zap feelings are the adrenaline trying to go somewhere .. same as the twitches. 

You absolutely do not have ALS. You have zero symptoms. You self diagnosed yourself with a very very very very rare disease and your not a Dr! You can't see clearly when you read ALS symptoms or you would see clear as day you don't have it. 

Hugs. You really can relax. I'm not a Dr but I've talked to several Drs, men with ALS and a neurologist.. but even if I didn't talk to all those people I know you don't have als... It's just absolutely not how it works. 

Enjoy you Saturday hun, take a deep breath. Stop googling , ignore the twitches that mean nothing and live your day!!!!!! Please. Please don't waste another day on this. 

[Panic Mode10 6]

Thank you for talking me down. You’ve helped me today. So scared but feel so weak and just drained. 
 

In my normal life only my bf knows a little of what I’m going through. I’m ashamed to talk about my fears. Really just can’t say a lot out loud for fear. I walk around and smile like nothing is wrong but inside I’m crumbling. My bf is so sweet and tries to help me but I’m so scared to tell him all I’m going through. 
 

I’m in the process of moving, a new job and my son is moving off to college. I know I need to talk to a professional and I plan to. I also plan to see a neurologist when I work up the courage. 
 

Thank you for listening and helping me. It means the world. 
 

❤️

[Holls 1505]

47 minutes ago, Panic Mode10 said:

Thank you for talking me down. You’ve helped me today. So scared but feel so weak and just drained. 
 

In my normal life only my bf knows a little of what I’m going through. I’m ashamed to talk about my fears. Really just can’t say a lot out loud for fear. I walk around and smile like nothing is wrong but inside I’m crumbling. My bf is so sweet and tries to help me but I’m so scared to tell him all I’m going through. 
 

I’m in the process of moving, a new job and my son is moving off to college. I know I need to talk to a professional and I plan to. I also plan to see a neurologist when I work up the courage. 
 

Thank you for listening and helping me. It means the world. 
 

❤️

Feeling weak isn't ALS weakness... That took me a long time to understand.. even though it was explained to me so many times..I'd always think but you don't feel what I do, I feel so so weak... People with ALS don't feel anything..they don't feel weak.. they are weak in that they fail. I wish the word weakness wasn't used Bec they have total failure at tasks.. the weakness you feel is real and I have it too, but it's not failure to do tasks . Anxiety is exhausting, worrying is exhausting. 

 

I completely understand how changes can increase anxiety. I have three kids and I started a new job before the virus..  it's a lot!!!! So give yourself a break and know that you aren't alone and your feelings are valid. I love my husband, but he doesn't understand my anxiety. I go to therapy once every two weeks and it has helped so so much. I get ahead of my anxiety now instead of letting it build before I get help. 

 

I personally don't think you need a neurologist. If you need peace of mind. Go to your pcp. They can do simple strength tests and that's it.. once I did that it helped me move forward. 

Hugs. 

[Christin 2]

On 5/4/2020 at 3:16 PM, Panic Mode10 said:

I’m so sorry you had to experience what you did. Thank you for the thoughtful responses you’ve given me. 
 

I can remember probably 1.5 to 2 yrs ago that my foot hurt so badly that I felt I could barely take it. I seriously thought I had an injury from my workout class, so I just pressed on. The foot issues got better after months,  then my calf became affected on the same side of my body. In your opinion, would I be seeing more symptoms of ALS by now? 
 

So engulfed right now and no apt with neurologist yet. 
 

 

About 5 years ago I was convinced I had ALS as well. I spent a year with this crippling anxiety but low and behold I didn’t have ALS. If you had ALS, which you don’t, you would be almost completely paralyzed by now. All of your symptoms are explained by anxiety. When you have health anxiety you hyper focus on your body and are pushing massive amounts of adrenaline through your system. This can cause pain, soreness, weakness and muscle twitching. Please know that I am not trying to down play your symptoms because what your feeling is real but it is coming from anxiety and not ALS. Work on the anxiety and I promise that the symptoms will get better. Health anxiety is a struggle and something that I still battle with (currently I am convinced that I have done damage to my liver because I drank a lot in the last 2 years even though all my blood tests are normal). Instead of googling every symptom, I contacted my doctor to talk about my anxiety and what we can do to manage it better. Just know that you are not alone and that all we can do is try our best each and everyday to not let the anxiety overwhelm us. 

[Ryan17 2]

@Holls Hopefully my response still comes up. I am a 21 year old male with an extreme fear of ALS. I did indeed go to the forum and they said I did not present with anything remotely like ALS. Yet my left arm (non-dominant one) feels heavy and weak a lot of the time. It feels like it just hangs to the side and constantly feels weak. I did some ALS arm tests and seemed fine, but I am so scared and worried. Please help!

[Iugrad91 501]

There have been more posts about ALS over the years than just about any other issue. Holls, who is on here once in a while and had her own worries about ALS says it best. ALS is failing, not feeling. ALS is not feeling weak, but failing at doing normal, everyday things like picking up your keys or using a fork or buttoning your shirt. Clinical weakness is different than feeling weak, so you can put that fear right out of your mind.

[bird253 1]

Hello, I have had the same thing going on for the past 6 weeks.  I have had tingling, numbness and twitching all over, which any of these could be anything and nothing.  I have gone to the ER 3x and two Neuro's 2x, which Cervical spine, brain MRI and EMG clear.  I even started out thinking that the EMG being done at 2.5 weeks post-symptoms was too soon, which could be true.  It seems that no matter how many tests have been done, I am inconsolable.  I didn't go to work for 3 weeks due to anxiety, but I went back.  I am still paranoid and thinking that everything that I experience is ALS.  I have started taking something for it, which has curbed some of it but not all of it.  I am at a loss.  I also wonder if it is all in my mind, as the mind can play tricks on a person.  I have been having trouble sleeping as well.  I had to choose something that is terribly hard to diagnose, which then consumes great amounts of time.  I know that these fears are irrational, especially when there are any people out there suffering.  

[Rosie206 4]

38 minutes ago, bird253 said:

Hello, I have had the same thing going on for the past 6 weeks.  I have had tingling, numbness and twitching all over, which any of these could be anything and nothing.  I have gone to the ER 3x and two Neuro's 2x, which Cervical spine, brain MRI and EMG clear.  I even started out thinking that the EMG being done at 2.5 weeks post-symptoms was too soon, which could be true.  It seems that no matter how many tests have been done, I am inconsolable.  I didn't go to work for 3 weeks due to anxiety, but I went back.  I am still paranoid and thinking that everything that I experience is ALS.  I have started taking something for it, which has curbed some of it but not all of it.  I am at a loss.  I also wonder if it is all in my mind, as the mind can play tricks on a person.  I have been having trouble sleeping as well.  I had to choose something that is terribly hard to diagnose, which then consumes great amounts of time.  I know that these fears are irrational, especially when there are any people out there suffering.  

@bird253 It seems like you are suffering with all of the classic anxiety symptoms. From looking back over the posts you can see that typically tingling or numbness or twitching isn’t always connected with ALS. As @Holls has put it, it’s more failure than feeling. In short, failure to be able to carry out every day tasks. It’s awful To constantly worry about this. I know as I’ve been there myself and have constant battles still to this day. I try to keep my mind from going to that dark place. Keep busy, keep active, do things you enjoy and hopefully those feelings will subside in time. Try and find some outlet that helps whether it’s listening to podcasts or self help books that will help you conquer your fears of this. I took comfort in the fact knowing I wasn’t the only one who felt this way. I’ve come along way from where I was but it has taken time and I still come up against it on my bad days. Stay strong and you will get through this and see brighter days! I assure you ❤️

[Holls 1505]

On 6/25/2020 at 3:44 PM, Ryan17 said:

@Holls Hopefully my response still comes up. I am a 21 year old male with an extreme fear of ALS. I did indeed go to the forum and they said I did not present with anything remotely like ALS. Yet my left arm (non-dominant one) feels heavy and weak a lot of the time. It feels like it just hangs to the side and constantly feels weak. I did some ALS arm tests and seemed fine, but I am so scared and worried. Please help!

Ryan! I am sorry I am just now seeing this. You do not have ALS and I'm glad the people on the ALS forum sent you on your way. You don't belong in that forum, please don't ever go back.. it will only make you anxious. If they told you no, it's a hard NO! They know what they are talking about. 

Feeling heavy and feeling weak points away from als. Hugs hun, you are young .. go live a long beautiful life and put this worry right out of your head. 

[Holls 1505]

On 7/4/2020 at 12:11 PM, bird253 said:

Hello, I have had the same thing going on for the past 6 weeks.  I have had tingling, numbness and twitching all over, which any of these could be anything and nothing.  I have gone to the ER 3x and two Neuro's 2x, which Cervical spine, brain MRI and EMG clear.  I even started out thinking that the EMG being done at 2.5 weeks post-symptoms was too soon, which could be true.  It seems that no matter how many tests have been done, I am inconsolable.  I didn't go to work for 3 weeks due to anxiety, but I went back.  I am still paranoid and thinking that everything that I experience is ALS.  I have started taking something for it, which has curbed some of it but not all of it.  I am at a loss.  I also wonder if it is all in my mind, as the mind can play tricks on a person.  I have been having trouble sleeping as well.  I had to choose something that is terribly hard to diagnose, which then consumes great amounts of time.  I know that these fears are irrational, especially when there are any people out there suffering.  

Hi! Fellow als worrier here. I'm so sorry this worry has got it's hooks in you. You don't have als. Please move on ! So many people that have als would love to have the results that you do. If you don't have comfort in testing have you considered therapy? I always trust my doctor's but I needed therapy to let the ALS worry go. I was scheduled for an emg and my husband put his foot down and said enough.. and he was right I didn't need the emg, I needed help with the thoughts that I couldn't control anymore. The mind absolutely can play tricks and it lies ! Thoughts are just thoughts, not truth. My therapist told me that and it was my ah ha moment. It was freeing. Big hugs. You will get through this. You don't have als. You have anxiety about Als. Huge huge huge difference.