• Welcome to the Anxiety Community Forum, a friendly space for discussion, help and support with mental health issues. Please register to post and use the extra features available to members. Click here to register.Everyone is welcome!

ALS???

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#1
First time post by an admitted hypochondriac. I’ll try to be brief! Had a 3 month episode of constant twitching about 5 years ago that could occur anywhere on my body. Dr. dismissed it to anxiety and put me on Wellbutrin and it finally went away! 5 years later they are back in full force!!! Went to another family Dr. and she says anxiety also! 2 weeks on Wellbutrin and still have them!! I’m on my last night of week long vacation on a lake in SC! I was hoping that this would be the relaxation I needed, the meds would kick in and I would return a new man!!! Didn’t happen!! I’ve tried to not let the twitching bother me, which during the day subsides while out on the lake or playing card, but when I hit the bed it’s like fireworks going off! I wake up every hour and check for the twitching and sure enough there they are! The fact that I had a similar episode 5 years ago and they went away still doesn’t bring me any relief and it is constantly on my mind that I have ALS and has ruined my vacation!! I don’t think it could lay dormant for that long?? I had a roommate from college pass away from it maybe 6 or 7 years ago and a former co-worker got diagnosed maybe 6 months ago! She posted her struggles on FB and I’m hoping that triggered the twitching and I really don’t have anything to worry about?? But dumb me googled twitching, ALS pops up and now I’m convinced I have it!! I have an EMG scheduled in a month, but it’s going to be a long month!! New Dr says the meds might take a month to kick in??? Hoping she’s right! I have a little bit of a heavy right leg which I know can be a symptom of BFS, which is what I hope I have!! But it is brutal analyzing every body disturbance and relating it to ALS!! I don’t think ALS picks the times when it wants to act up?? I’m decent during the day, but dread laying down and going to bed!! Dr. says, I’m walking, talking and lifting heavy objects, I own a carpet cleaning company and carry a heavy machine around constantly and use a vacuuming motion all day! So she isn’t the least bit concerned but I am waiting for my speech to slur or leg to start dragging!!! Any thoughts as I’m sure I’ll be up in the middle of the night surfing the net!! Told ya I’d be brief!! Thanks for any thoughts to help ease my mind with any knowledge you may have!
 

triceps

Well-Known Member
Joined
Aug 7, 2018
Messages
1,101
Likes
592
#2
Hi and welcome Gaturz13. Google is not a friend to hypochondriacs. I'm not sure what I can say that the doctor hasn't already told you. Maybe you could try to take some naps just to throw off the anticipation of going to bed as usual. Again, welcome.
 

adamden

Active Member
Joined
Jun 2, 2019
Messages
233
Likes
81
#3
Hi, and welcome to the forum first of all Gaturz.
Just as triceps said, Google is not your friend. We sufferers of health anxiety tend to turn to the sinister "Dr. Google" whenever we experience any symptoms of any nature. It's just what we do.
Let me just say, if you had ALS, your condition would be deteriorating much more rapidly and you would be experiencing far more concerning symptoms than twitching.
I think it would also be safe to say that the posts about those you know with ALS would trigger your health anxiety. It doesn't surprise me.
 

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#4
Hi and welcome Gaturz13. Google is not a friend to hypochondriacs. I'm not sure what I can say that the doctor hasn't already told you. Maybe you could try to take some naps just to throw off the anticipation of going to bed as usual. Again, welcome.
Thanks!!
 

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#5
Hi, and welcome to the forum first of all Gaturz.
Just as triceps said, Google is not your friend. We sufferers of health anxiety tend to turn to the sinister "Dr. Google" whenever we experience any symptoms of any nature. It's just what we do.
Let me just say, if you had ALS, your condition would be deteriorating much more rapidly and you would be experiencing far more concerning symptoms than twitching.
I think it would also be safe to say that the posts about those you know with ALS would trigger your health anxiety. It doesn't surprise me.
Thanks for your response! Deep down I really don’t think I have it..... but man your mind can convince you that you do!!!
 

Zeynep

New Member
Joined
Jul 4, 2019
Messages
27
Likes
7
#6
I've had a twitch for a month. That worries me. I'm twitching. It's sad what you wrote. After 5 years ALS. Terrible .. a doctor in Turkey ALS says you're moving fast. 5 years is too long. Are you sure about your friend ALS? My friends are twitching for 5 years or 7 years but not ALS. Some friend neuropathy or restless leg syndrome. Not Bfs. But the doctor said no worries because I constantly twitch. I'm not sure about the diagnosis
 

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#8
I've had a twitch for a month. That worries me. I'm twitching. It's sad what you wrote. After 5 years ALS. Terrible .. a doctor in Turkey ALS says you're moving fast. 5 years is too long. Are you sure about your friend ALS? My friends are twitching for 5 years or 7 years but not ALS. Some friend neuropathy or restless leg syndrome. Not Bfs. But the doctor said no worries because I constantly twitch. I'm not sure about the diagnosis
I had an episode of twitching 5 years ago that came back a couple of months ago. I still have the twitching. I had a old college roommate pass away in 2007 from ALS. Not sure what his early symptoms were? I recently had a co-worker diagnosed with it! But don’t know her early symptoms? For the most part all I have is the twitching.
 

Zeynep

New Member
Joined
Jul 4, 2019
Messages
27
Likes
7
#9
I had an episode of twitching 5 years ago that came back a couple of months ago. I still have the twitching. I had a old college roommate pass away in 2007 from ALS. Not sure what his early symptoms were? I recently had a co-worker diagnosed with it! But don’t know her early symptoms? For the most part all I have is the twitching.

Yeah, I know the symptoms of ALS. Only everybody says the first sign is weakness. Twitch is sad. My arms, my feet, my back, my shoulders, I've been twitching everywhere for 23 days and my hands are weak. But I'm afraid. :( I talked to a lot of people, they've been twitching for years, but they're not ALS.
 

Zeynep

New Member
Joined
Jul 4, 2019
Messages
27
Likes
7
#10
I went to neurology two months ago. My right leg was aching. EMG did it. 3. Needle sunk just below the knee.and said restless legs or neuropathy. I came home. Ten days later I started twitching. He didn't do EMG again. He said no. But after the EMG twitches occurred ????
That's why I don't trust EMG. In addition, the EMG was performed only under the right leg. But my whole body is twitching. I'm very worried. Looks like I'm using my hands too hard. I'm afraid to be ALS. I do not know what will I do.:arghh:
I can write with translation.soryy...
 
Joined
Jul 13, 2019
Messages
69
Likes
21
#11
I am currently having the same concerns. I have been Twitching all over my body for 2 months. I have an EMG scheduled in two weeks and have been a nervous wreck. I already have severe anxiety. I can't eat , sleep or function. All day and even in my sleep all I do is think about it. I am starting to feel other symptoms as well. Swallowing hard and often. Twitches and anxiety wake me up from my sleep. I barely get sleep and have totally obsessed with the possible doom of my reality. Hearts always racing etc I am in full blown panic mode daily . I went to doc's because of neck tension, now neck tension is gone and now all of this . I have passed neurological exam and MRI, looking forward yet terrified for the EMG. So stressed and I know my friends and family are tired of hearing me complain all the time about it. Sorry about the long rant!
 

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#12
I am currently having the same concerns. I have been Twitching all over my body for 2 months. I have an EMG scheduled in two weeks and have been a nervous wreck. I already have severe anxiety. I can't eat , sleep or function. All day and even in my sleep all I do is think about it. I am starting to feel other symptoms as well. Swallowing hard and often. Twitches and anxiety wake me up from my sleep. I barely get sleep and have totally obsessed with the possible doom of my reality. Hearts always racing etc I am in full blown panic mode daily . I went to doc's because of neck tension, now neck tension is gone and now all of this . I have passed neurological exam and MRI, looking forward yet terrified for the EMG. So stressed and I know my friends and family are tired of hearing me complain all the time about it. Sorry about the long rant!
I am currently having the same concerns. I have been Twitching all over my body for 2 months. I have an EMG scheduled in two weeks and have been a nervous wreck. I already have severe anxiety. I can't eat , sleep or function. All day and even in my sleep all I do is think about it. I am starting to feel other symptoms as well. Swallowing hard and often. Twitches and anxiety wake me up from my sleep. I barely get sleep and have totally obsessed with the possible doom of my reality. Hearts always racing etc I am in full blown panic mode daily . I went to doc's because of neck tension, now neck tension is gone and now all of this . I have passed neurological exam and MRI, looking forward yet terrified for the EMG. So stressed and I know my friends and family are tired of hearing me complain all the time about it. Sorry about the long rant!
 

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#13
Man we are in the same boat!!! My only saving grace is that I had this same type episode 5 years ago that lasted more than 3 months! I took Wellbutrin until the twitches in my leg went away and then dumb ass me quit taking them!! My Dr. at the time was adamant that it is all anxiety related!!! As well as my current Dr.!!! They know more than I do so I sure hope they’re right!! The fact that it went away for 5 years is somewhat reassuring!! But this still sucks!! Good Luck!
 

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#14
What did your neurological exam consist of?? I passed a very minimal strength test at my last Dr. visit. I have since found several tests while googling, (if I get through this I’m NEVER googling any symptoms EVER again), a toe tapping test, forearm and finger rolls, and walking on your tip toes and heels, and the Bobinski test! Fortunately I pass them all!! I’ve just got it in my head that the twitching is the beginning of the end!! Thankfully my Dr.s strongly disagree!!
 
Joined
Jul 13, 2019
Messages
69
Likes
21
#15
Man we are in the same boat!!! My only saving grace is that I had this same type episode 5 years ago that lasted more than 3 months! I took Wellbutrin until the twitches in my leg went away and then dumb ass me quit taking them!! My Dr. at the time was adamant that it is all anxiety related!!! As well as my current Dr.!!! They know more than I do so I sure hope they’re right!! The fact that it went away for 5 years is somewhat reassuring!! But this still sucks!! Good Luck!
Thank you!! This is just very scary!! All started when they doc ordered MRI to check for MS because while I was in office, left arm started feeling weak. So she said okay strength is less than right arm let's do MRI
What did your neurological exam consist of?? I passed a very minimal strength test at my last Dr. visit. I have since found several tests while googling, (if I get through this I’m NEVER googling any symptoms EVER again), a toe tapping test, forearm and finger rolls, and walking on your tip toes and heels, and the Bobinski test! Fortunately I pass them all!! I’ve just got it in my head that the twitching is the beginning of the end!! Thankfully my Dr.s strongly disagree!!
Same minimal strength tests, balance , finger touching, arm and leg strength. Never heard of forearm nor Bobinski. After this I WILL NEVER GOOGLE SYMPTOMS AGAIN. I already have generalized anxiety disorder, PTSD and depression
 
Joined
Apr 25, 2019
Messages
37
Likes
13
#16
im on about 6 months twitching, had Nerve conduction, SSEP testing done that has pinpointed my issues to my lower back and neck, my nuerologist says no way i have ALS or MS... i do hear a lot of grinding when i move my head, back and even shoulders in different directions.. its not hard for some people to wear their discs down doing strenuous work, improper movements can push the discs outward. i've done a lot of research on curing the diseases i feared, outside of conventional medicine. i changed to a high nutrient dense diet and started slowly working out from like 20 minutes now i do 2 hours. im making gains again and at one point i was so worn down and tired i would sleep at work for 4 or more hours and hide. i was getting weak and it was hard to stand without my legs trembling. once i got into feeding my body right "minding my mitochondria" as dr. terry wahls says... even with my nerves being pinched or whatever, i can work through it.
 
Joined
Apr 25, 2019
Messages
37
Likes
13
#17
and second anxiety and depression are expressions of the gut microbiome as well and a proper diet can solve mental amd physical issues. whatever that diet is for you, find it and get on it through elimination.. my diet is modified paleo called the wahls protocol and its turned my life around. you may think a diet is quite pricey but so are frequent doctor visits amd prescriptions.. we gotta heal our bodies people. we need to take the time to understand real nutrition, not just a basic one size fits all food pyramid and suggestions.
 

Gaturz13

New Member
Joined
Jul 12, 2019
Messages
9
Likes
3
#18
im on about 6 months twitching, had Nerve conduction, SSEP testing done that has pinpointed my issues to my lower back and neck, my nuerologist says no way i have ALS or MS... i do hear a lot of grinding when i move my head, back and even shoulders in different directions.. its not hard for some people to wear their discs down doing strenuous work, improper movements can push the discs outward. i've done a lot of research on curing the diseases i feared, outside of conventional medicine. i changed to a high nutrient dense diet and started slowly working out from like 20 minutes now i do 2 hours. im making gains again and at one point i was so worn down and tired i would sleep at work for 4 or more hours and hide. i was getting weak and it was hard to stand without my legs trembling. once i got into feeding my body right "minding my mitochondria" as dr. terry wahls says... even with my nerves being pinched or whatever, i can work through it.
and second anxiety and depression are expressions of the gut microbiome as well and a proper diet can solve mental amd physical issues. whatever that diet is for you, find it and get on it through elimination.. my diet is modified paleo called the wahls protocol and its turned my life around. you may think a diet is quite pricey but so are frequent doctor visits amd prescriptions.. we gotta heal our bodies people. we need to take the time to understand real nutrition, not just a basic one size fits all food pyramid and suggestions.
im on about 6 months twitching, had Nerve conduction, SSEP testing done that has pinpointed my issues to my lower back and neck, my nuerologist says no way i have ALS or MS... i do hear a lot of grinding when i move my head, back and even shoulders in different directions.. its not hard for some people to wear their discs down doing strenuous work, improper movements can push the discs outward. i've done a lot of research on curing the diseases i feared, outside of conventional medicine. i changed to a high nutrient dense diet and started slowly working out from like 20 minutes now i do 2 hours. im making gains again and at one point i was so worn down and tired i would sleep at work for 4 or more hours and hide. i was getting weak and it was hard to stand without my legs trembling. once i got into feeding my body right "minding my mitochondria" as dr. terry wahls says... even with my nerves being pinched or whatever, i can work through it.
 

Zeynep

New Member
Joined
Jul 4, 2019
Messages
27
Likes
7
#19
When these twitches are over, I'm definitely not going to google search. He taught me. Twitches come back every night when you lie on the bed. Sometimes it twitches throughout the day. The doctor gave me a neuropathy protocol EMG. But ALS EMG is something else. That's why I don't trust him. however, the doctor said that if you have ALS, only one muscle gives symptoms. Besides, I'm a thyroid patient.
 

Zeynep

New Member
Joined
Jul 4, 2019
Messages
27
Likes
7
#20
Hopefully Google translates properly. Excuse me. Als scares me. Like dying every day .. I am constantly looking for an als sign on my body. But the twitches never ended.:nailbiting:
 
Top Bottom