ALS fear

[Cubanborn87 42]

1 hour ago, Iugrad91 said:

Cuban, as Holls said until you accept that it’s anxiety and not ALS you will continue to feel these things and more. Check out the list of anxiety symptoms posted on this forum. Yours are all there. You don’t have to wait for the EMG to start working on your anxiety. You read Megans summary of her neurologist appt 4hrs ago where her doc said none of those symptoms are ALS, they are the opposite, and yet you’re still here after that asking questions. You do not even consider that anxiety could be the cause of it all. Do you see how many other people have posted on here about ALS worries? And all of them were anxiety. Why are you special and the only one who’s problem could be ALS? Please please please tell your anxiety to go to hell, try to get some exercise to get rid of all that adrenaline and cortisol (even walking would help), and read up on CBT so you can start working your way out of this hole. 

I am trying , i feel so helpless I don't know what to do. I asked for a referral to get help with my anxiety and I also started taking the Prozac.

I don't know what's going on, every day I feel worse. I feel like my legs are getting weaker, my hands seem more shaky than usual and injsut got really winded just walking down the street , I tried to clock in at work and failed the first swipe because my hand was really shaky and every time I try to go downstairs my legs shake as well. I know there is a good chance is all anxiety based, but it feels so helpless. Because every week I feel weaker and weaker. I know guys feel is not an AlS symtom, I know. But even then I don't feel healthy at all. I also get this contractions on my feet that makenky toes curl and the same with my hands. Sometimes I get them on my jaw as well. Almost as if the muscles are involuntarily doing what they want to.

 

I will try start to going back to the gym this week. I don't know how it will go, just 4 weeks ago I felt fine. Now I feel like I could barely walk on the treadmill. Why does it feel like it's moving so fast? Whatever this is 

 

I want to thank all of you, you have been so patient with me and supportive. You guys are the best. It has gotten to the point that my own family and wife are fed up with me and I have noone to talk to.

Thank you guys it means a lot to me

[Cubanborn87 42]

47 minutes ago, Nik Nak said:

I wish I could agree with this so much. I’m currently sitting on the floor at work sobbing because I am 100% convinced that I have bulbar als. My mouth just isn’t functioning properly. It’s not the standard symptoms of bulbar onset they are more subtle but I literally can’t use my mouth the same way and I feel like I am going to be THAT person who has health anxiety and ends up with the super rare illness that they fear the most. It’s a nightmare I just want this worry to be over. 

I have been there for 6-8 weeks, hang in there. I am rooting for you. I know exactly what this feels like and it's the worst. I was eating last night and by the end of my meal my tongue and jaw were fatigued. All I could think of was ALS. 

[Iugrad91 501]

36 minutes ago, Cubanborn87 said:

I am trying , i feel so helpless I don't know what to do. I asked for a referral to get help with my anxiety and I also started taking the Prozac.

I don't know what's going on, every day I feel worse. I feel like my legs are getting weaker, my hands seem more shaky than usual and injsut got really winded just walking down the street , I tried to clock in at work and failed the first swipe because my hand was really shaky and every time I try to go downstairs my legs shake as well. I know there is a good chance is all anxiety based, but it feels so helpless. Because every week I feel weaker and weaker. I know guys feel is not an AlS symtom, I know. But even then I don't feel healthy at all. I also get this contractions on my feet that makenky toes curl and the same with my hands. Sometimes I get them on my jaw as well. Almost as if the muscles are involuntarily doing what they want to.

 

I will try start to going back to the gym this week. I don't know how it will go, just 4 weeks ago I felt fine. Now I feel like I could barely walk on the treadmill. Why does it feel like it's moving so fast? Whatever this is 

 

I want to thank all of you, you have been so patient with me and supportive. You guys are the best. It has gotten to the point that my own family and wife are fed up with me and I have noone to talk to.

Thank you guys it means a lot to me

I think you need to find someone to talk to and work thru your thinking patterns so you can stop all the what if’s. Meds alone may help but I’ve read that the percentage of people that improve their anxiety is highest when they also do CBT along with taking medication. Psychology Today online has a search engine where you can look for a therapist or psychologist/psychiatrist in your area and filter by issue, insurance, etc...if your doc did not give you a referral right there at the appointment then I would start looking for someone while you follow up with them.

[Nik Nak 8]

44 minutes ago, Cubanborn87 said:

I have been there for 6-8 weeks, hang in there. I am rooting for you. I know exactly what this feels like and it's the worst. I was eating last night and by the end of my meal my tongue and jaw were fatigued. All I could think of was ALS. 

Problem is, my mouth isn’t feeling fatigued...it just doesn’t work. I can’t make a kissing sound anymore and I can’t suck hard enough to make a love bite (I’ve been trying on myself). Anxiety doesn’t full on stop it working like mine has. I’m so scared  

[Nik Nak 8]

Okay so I went to the neurologist and he was a specialist in neuromuscular deseases. He said that I do not have ALS and that I was catastophising everything.  He immediately jumped on my mental health problems and told me the problem isn’t physical but mental. He’s given me the information of a psychologist/therapist he very highly regards and told me I should visit her to sort the out the root of my worries.

[Cubanborn87 42]

24 minutes ago, Nik Nak said:

Okay so I went to the neurologist and he was a specialist in neuromuscular deseases. He said that I do not have ALS and that I was catastophising everything.  He immediately jumped on my mental health problems and told me the problem isn’t physical but mental. He’s given me the information of a psychologist/therapist he very highly regards and told me I should visit her to sort the out the root of my worries.

Great to hear !!! You are lucky you got a neuromuscular disease specialist. I was not as fortunate. Which makes me second guess my neurologist a lot. 

[Holls 1505]

48 minutes ago, Cubanborn87 said:

Great to hear !!! You are lucky you got a neuromuscular disease specialist. I was not as fortunate. Which makes me second guess my neurologist a lot. 

Seriously? You saw a neurologist!!! A Dr that knows what to looks for regarding als. Neuromuscular specialist or not, he knows what to look for. 

I really really hope that after the emg you let this go. 

[Holls 1505]

1 hour ago, Nik Nak said:

Okay so I went to the neurologist and he was a specialist in neuromuscular deseases. He said that I do not have ALS and that I was catastophising everything.  He immediately jumped on my mental health problems and told me the problem isn’t physical but mental. He’s given me the information of a psychologist/therapist he very highly regards and told me I should visit her to sort the out the root of my worries.

Glad to hear. 

[Cubanborn87 42]

15 minutes ago, Holls said:

Seriously? You saw a neurologist!!! A Dr that knows what to looks for regarding als. Neuromuscular specialist or not, he knows what to look for. 

I really really hope that after the emg you let this go. 

I know, I hope so . I think he is a good doctor. However if my appointment was today I would not feel as confident. Right now I am sitting down leaning toward with my arm on my things typing. I put both feet up on tip toes and my right legs shakes. Weird thing is my bad side is the left side.

[utrocket09 115]

42 minutes ago, Cubanborn87 said:

I know, I hope so . I think he is a good doctor. However if my appointment was today I would not feel as confident. Right now I am sitting down leaning toward with my arm on my things typing. I put both feet up on tip toes and my right legs shakes. Weird thing is my bad side is the left side.

If you stand on your tip toes of course your legs are going to shake.

[clearhead 129]

2 hours ago, Cubanborn87 said:

Great to hear !!! You are lucky you got a neuromuscular disease specialist. I was not as fortunate. Which makes me second guess my neurologist a lot. 

Damn Cuban! You’re really out of sorts. Your neurologist has years of schooling and on the job experience, yet you think that you know more than the doc based on reading some stories off of the Internet? Who’s giving you the EMG?

[Cubanborn87 42]

7 minutes ago, clearhead said:

Damn Cuban! You’re really out of sorts. Your neurologist has years of schooling and on the job experience, yet you think that you know more than the doc based on reading some stories off of the Internet? Who’s giving you the EMG?

Not sure, it's someone else. I just noticed I have been biting my tongue. It's freaking me out. My tongue was sore and I used the phone to take a picture. And right at the end you can see that I have been biting it. I know I get those jaw jerks at night , wonder if that's what did it 

[clearhead 129]

3 hours ago, Cubanborn87 said:

Not sure, it's someone else. I just noticed I have been biting my tongue. It's freaking me out. My tongue was sore and I used the phone to take a picture. And right at the end you can see that I have been biting it. I know I get those jaw jerks at night , wonder if that's what did it 

So you come back with more symptoms? Biting your tongue ? Can you imagine if everyone went running to the neurologist every time they bit their tongue? You really need to focus on your anxiety. 

[Cubanborn87 42]

11 hours ago, clearhead said:

So you come back with more symptoms? Biting your tongue ? Can you imagine if everyone went running to the neurologist every time they bit their tongue? You really need to focus on your anxiety. 

I just find it very odd, that all of a sudden I am biting the back of my tongue. It has been sore for days. This wasn't just a one time occurrence I don't think. I can see the teeth marks . I saw something a long time ago about ALS patients having teeth marks. The shakiness in my hands really worries me to and legs.

I have been getting twitches in my neck as well which is something new and for the first time ever on my shoulders last night. 

But the involuntary jerks is what scares me the most. 

I also find it weird how my twitching has gone down a lot , but my feet , specially my problem foot seems to be twitching every time I have it at rest.

[Iugrad91 501]

You will continue to have new symptoms until you get a hold of the anxiety. I bite my tongue and lip when my anxiety is high. Both when talking and eating. You are so hyper focused on every sensation you have right now. You must get a hold of your anxiety or that’s what is going to harm you more than anything you’re worried about at the moment.

[ScaredGuy 6]

1 hour ago, Cubanborn87 said:

I just find it very odd, that all of a sudden I am biting the back of my tongue. It has been sore for days. This wasn't just a one time occurrence I don't think. I can see the teeth marks . I saw something a long time ago about ALS patients having teeth marks. The shakiness in my hands really worries me to and legs.

I have been getting twitches in my neck as well which is something new and for the first time ever on my shoulders last night. 

But the involuntary jerks is what scares me the most. 

I also find it weird how my twitching has gone down a lot , but my feet , specially my problem foot seems to be twitching every time I have it at rest.

@Cubanborn87, you really gotta take a step back and think rationally here, reading through a lot of what you have said, man I was the exact same way around Christmas time, the more I kept believing I had it, the more my symptoms increased, the more I felt I couldn't run as far at the gym, the more I felt my grip strength just wasn't there, the less weight I felt I could carry. My wife forced me to get actual help apart from just taking medication because she needed a partner and someone present to help out with our child. It's honestly like a role reversal here, there's a reason your family is getting fed up, because they can see that it's the anxiety, not a terrible disease. There is literally a chemical imbalance in your mind right now that's causing all of this. You stated you went on your tip-toes your leg started shaking, guess what, my legs, arms, and everything did the same thing, difference between what you and I experience and what someone with that devastating disease experiences is the fact that you can actually get up on your tip-toes, they can't, and never felt weak to the point where they couldn't do it, they just lost the ability. 

My therapist told me I had to stop focusing on the negative, stop focusing on the least likely outcome, and you'll start to feel better, start to feel like yourself again. I started my recovery before I got my EMG, I'll admit, there was a tiny bit of doubt before I got there, but that's anxiety for ya, keeps eating at you. I was afraid that if I let myself believe I didn't have it, that I would leave that appointment with my nightmares answered. But I kept telling myself, "I will grow old with my wife, I am willing and able today, I will watch my children grow, I most likely don't have ALS." Start a journal, do something to help your mind, this isn't going to stop until you take action. You've gotta be strong now, you've got to do this for your family, if you can't do it for yourself, try believing it for them, that worked for me. I am pulling and praying for you.

[Cubanborn87 42]

@ScaredGuy Thank You, I appreciate the support. I just started taking Prozac a few days ago. Finally got the referral for the psychiatrist, but they are booked until March. I hope you are right man, I'll try to go to the gym tonight after 6 weeks of not going. I really want to see if I still have it, or something is indeed wrong. 

I just want to see some improvement, just get up one days and one of my many symtoms be gone.

Luckily my EMG is in exactly 8 days, I am very anxious about that. If I can pass that test, I hope it will be a step in the right direction. 

 

[Dotdispenser 12]

You’re not going to just wake up and see your symptoms be gone. Did you just wake up one morning and have a paycheck? No—you had to get up and work for it. You have to get up and work on your anxiety for it to get better. 

 

And remenber that time when you called in 3 straight days? Unless you’re on salary, you got a smaller paycheck. Anxiety doesn’t run on salary. It runs hour by hour, minute by minute, and second by second—you have to be consistent and constantly work at it or it isn’t going to get better. 

 

I have full faith that you’re going to get better with your anxiety, but I’m hoping you can stop wondering and asking those “what if’s” and just move on with your life and focus on your anxiety and wonder how to get your anxiety down. Prayers coming from all around, brother. 🙏🏼

[Cubanborn87 42]

24 minutes ago, Dotdispenser said:

You’re not going to just wake up and see your symptoms be gone. Did you just wake up one morning and have a paycheck? No—you had to get up and work for it. You have to get up and work on your anxiety for it to get better. 

 

And remenber that time when you called in 3 straight days? Unless you’re on salary, you got a smaller paycheck. Anxiety doesn’t run on salary. It runs hour by hour, minute by minute, and second by second—you have to be consistent and constantly work at it or it isn’t going to get better. 

 

I have full faith that you’re going to get better with your anxiety, but I’m hoping you can stop wondering and asking those “what if’s” and just move on with your life and focus on your anxiety and wonder how to get your anxiety down. Prayers coming from all around, brother. 🙏🏼

Thank You. You make a very valid point. I do have to start working on it right now.my wife said to me today that I had given up on life. That was tough to hear but to some extent I think she is right. Starting today I will try to get better, and hopefully new symtoms will not defeating me any longer. That is what has been so hard for next as soon as I am getting over an old symtom a new one comes out of nowhere. 

[Iugrad91 501]

2 hours ago, Cubanborn87 said:

@ScaredGuy Thank You, I appreciate the support. I just started taking Prozac a few days ago. Finally got the referral for the psychiatrist, but they are booked until March. I hope you are right man, I'll try to go to the gym tonight after 6 weeks of not going. I really want to see if I still have it, or something is indeed wrong. 

I just want to see some improvement, just get up one days and one of my many symtoms be gone.

Luckily my EMG is in exactly 8 days, I am very anxious about that. If I can pass that test, I hope it will be a step in the right direction. 

 

When you go to the gym, have a positive mindset and forget about all your sensations. Tell yourslef “I’m gonna kick anxiety’s butt by working out” or “this is great for my body and mind”. Do not go in looking for problems or your mind will create them. Don’t think about testing yourself, just put some earbuds in, listen to some loud music, and burn off that adrenaline.

[Cubanborn87 42]

26 minutes ago, Iugrad91 said:

When you go to the gym, have a positive mindset and forget about all your sensations. Tell yourslef “I’m gonna kick anxiety’s butt by working out” or “this is great for my body and mind”. Do not go in looking for problems or your mind will create them. Don’t think about testing yourself, just put some earbuds in, listen to some loud music, and burn off that adrenaline.

Yes sir!! I know I will try to test myself. I can't help but think I will. But I will try to not do that and just go and burn off some steam.

[Solafide3 18]

Nobody here talks about having jerks during the daytime. My foot will jerk, my leg will jerk, my back will jerk. Just one quick jerk. That’s what freaks me out. And I always feel like I’m going to fall when I walk. It’s not dizziness. It’s like my feet are clumsy. Today I have that feeling like I just wanna be dead to get away from the worry but dying is why I’m worried. 

[clearhead 129]

1 hour ago, Solafide3 said:

Nobody here talks about having jerks during the daytime. My foot will jerk, my leg will jerk, my back will jerk. Just one quick jerk. That’s what freaks me out. And I always feel like I’m going to fall when I walk. It’s not dizziness. It’s like my feet are clumsy. Today I have that feeling like I just wanna be dead to get away from the worry but dying is why I’m worried. 

Twitches with BFS vary greatly.

• A lot of people experience “buzzing” which is actually a very fast, small twitch that feels like someone is holding a vibrator against your skin.
• Other twitches appear as little ripples just under your skin. You can felt but sometimes aren’t.
• Twitches that hit one spot and disappear and there are others (such as finger twitches) that will move the finger to one side, hold it there for a quick second, then release it back to normal.
• The jolt twitches that move a whole body part, such as a hand, an arm or even a leg.
• There are also the creepy – crawly worm like movements often found in the arches of the feet and ankles and calves that you can see but are sometimes not felt, and a lot of people get the body jolts known as myoclonic jolts. These are also benign.
• The hit and run “thumpers where you get one big twitch in one spot and then its gone. It may hit an entirely different spot later or even the same spot over and over again with lots of time in between with no twitching at all.

 

ALS twitches on the other hand are a secondary reaction from dying tissue and how hard do you thing dying tissue can twitch? Not very hard at all. Most people diagnosed with ALS never even noticed the twitches and it is common for a doctor to use a type of strobe light to see them with the naked eye because they are so fine and weak.

[Cubanborn87 42]

2 hours ago, Solafide3 said:

Nobody here talks about having jerks during the daytime. My foot will jerk, my leg will jerk, my back will jerk. Just one quick jerk. That’s what freaks me out. And I always feel like I’m going to fall when I walk. It’s not dizziness. It’s like my feet are clumsy. Today I have that feeling like I just wanna be dead to get away from the worry but dying is why I’m worried. 

I know exactly what you are talking about. I had that starting 2 weeks ago and you are right it is super scary. I'll give you a few examples, my knee would jerk while walking. While typing on the keyboard my hand would jerk and my finger would hit the key twice, so I had to constantly fix a typo on an email or document. Sometimes driving I would have the jerk on my hand and would make my fingers grip the steering wheel. Also get them on my foot while driving which makes my toes curl and sometimes my foot would hit the gas or brake pedal involuntary as a result of the jerk. Sometimes I go to grab something and my arm or elbow would jerk and I fail completely because my hand or fingers get slightly moved. Per example turn of a switch, grab a pill bottle etc. I have gotten them on my jaw whike I talk which make me stutter. Because while you are talking your jaw basically gently closes some which throws you off. I got one of those while sleeping and bit my tongue a week ago. 

Those are just some examples, I will say that my jerks have gotten a lot better as time has gone on. But specially at first it was happening often and it is extremely scary.

[clearhead 129]

3 minutes ago, CHENG55 said:

 

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