need some help

[help1127]

Hello,

I have been dealing with abdominal twitches now for 2 years off and on mainly at night when laying down. I started to feel them more often about a month ago and I goggled my symptoms and ALS came up. I went to my primary care and started to have twitches all over my body mainly when Im sitting down. I suffer from Generalized Anxiety for years and have been on Peroxetine for the last 10 years. I decided to stop taking Peroxetine 3 months ago and now the twitching has been non stop.

I have been to 3 neurologist and 1 ALS specialist plus had an emg of my right side done which came out clean and my physical has been clean as well. The ALS specialist told me that its BFS. All three of them tell me to get ALS out of my mind and its my anxiety but I cant as I feel like this is not going away

About a week ago I started to feel my tongue is feeling big and looks scalloped as well plus I have tightness in my neck and feel a lump in the back of my throat. Which I pointed out to my ALS specialist but he said its all anxiety.

Does this sound like something I need to pursue further. Can this be the beginning of ALS? Just need some advice please...

 

[Cris R]

Hi help1127,
That lump in the back of your throat is probably the overall anxiety taking hold. You stated that you have generalized anxiety and then you went ahead and googled "twitching" which resulted in a search for ALS. Then all of a sudden, you start feeling these other issues.

Probably because you are even more stressed now than you were before.

I had anxiety issues prior to my fathers ALS diagnosis a few months ago. He was diagnosed as Sporadic ALS due to not having any family history whatsoever. I should have been content with that diagnosis but I kept digging for more info. Big mistake! It just snowballed my anxiety and I have been unfairly putting my parents in a situation where I'm question my own health during a time where my father has already been diagnosed with this terrible disease.

Unfortunately, no one here is going to be able to diagnose you over the internet. Just not gonna happen.

If you are definitely concerned this is something more than high level anxiety, make an appointment with a neurologist to have an EMG done. From that point, a neurologist will be able to tell you if further testing is needed. If your EMG comes back clean and no further testing is needed, you might need to get on something for that anxiety as high anxiety can physically wreak havoc on your body and mind.

 

[help1127]

Hey Chris,

I did get an EMG of my right side and it came back clean but I cant shake this from my head , its driving me crazy. I have also been feeling a buzzing sensation in my legs.

Thanks for the advice..

 

[Cris R]

Hey Chris,

I did get an EMG of my right side and it came back clean but I cant shake this from my head , its driving me crazy. I have also been feeling a buzzing sensation in my legs.

Thanks for the advice..

I'm sorry, I did notice that after I posted but we do not have the ability to go back and edit.

If you've had EMG's performed and they've come back fine, you are probably just dealing with some really high anxiety. You can only go by what the test results show. Unfortunately it sounds like even if a doctor told you that you are 100% healthy and ok, and you are still doubting, you may want to start thinking of other alternatives to calm those nerves.

My doctor prescribed me Prozac to help ease my anxiety. I tried it for a little over a month and I did not like the way it was making me feel. However, I think it's time to go back and try something else as my anxiety is really starting to grab hold of me once again. In my mind I know that I have a better chance of dying of heart disease or cancer before ALS but my mind is not cooperating. It's making those other two killer diseases seem like childs play. I even said the other day to my wife that I'd rather have cancer than ALS. That is absolute lunacy! Cancer kills way more people than ALS ever has or ever will. But because the ALS is right in front of me with my father, it's all I can focus on right now.

If you don't mind me asking, are you on any medication at the moment for your anxiety?

 

[help1127]

My primary put me on Escitalopram 20MG. sorry to hear about your dad. I'm also married with 2 kids 10 and 13. I want to be strong but this is just taring me apart. I dont know what to do. the ALS specialist told me that I need to see a psychiatrist and he told me that I absolutely dont have ALS. The thing that really bothers me is that so many people on here have started like this and then ended up with ALS.

 

[help1127]

I have also had burning sensation in my arms and my left arm hurts. My other concern is that my tongue is scalloped with neck tightness. Could this be the start of bulbar?

 

[LinCan]

Hi. As an anxious person myself, I would suggest that you see a psychiatrist to discuss these issues and try to find a good anti-anxiety medication. Anxiety is a very crippling problem. I would also suggest that you take a break from websites like this and others about symptoms and try to focus on other things, especially doing things with your family, and friends.

Linda

 

[help1127]

Thanks LinCan,

I agree but I find myself here browsing most of my free time. I am really worried about this......

 

[ottawa girl]

Please spend your free time with your kids! Stay off the internet. I reckon, you absolutely know it's not good for you - or your family.

Please - you have something curable - see the psychiatrist and get cured.

What's so hard about that?

 

[help1127]

ottawa girl,

I feel like Im talking to a celebrity. I have been reading through alot of post and you have always been able to give some great advice. I know how annoying this is when coming from someone who has not been diagnosed. Im having these twitches as we speak but when I go to the Nero he cant see them, its so frustrating. Can this really be from anxiety. What about the scalloped tongue? I do appreciate the help......

 

[vickim]

the scalloped tongue is where your tongue rests against your teeth. Anxiety can be a real health condition. It can cause hair loss, high blood pressure, and twitches. The more you worry the more you will twitch. It is a vicious circle. Please listen to Elaine and seek some help and get some meds to help you through this time.

If you need to browse then shop for santa, find a new recipe just stay away from sites like this. It will only feed the fear.

 

[help1127]

Do my symptoms sound like ALS? I really need to get this out of my head but the twitching is killing me...

 

[help1127]

I also noticed that my hands feel tight, I feel sore from the twitching and I feel weak all over

 

[vickim]

I am not a dr, but I don't think so. The twitching (bfs) can cause pain and fatigue. Stress can do this also. Your best bet would be get some meds for the stress and see how it does for 6 months or so.

 

[Barbie]

The thing that really bothers me is that so many people on here have started like this and then ended up with ALS.[/I]

OK, I am not going to get going here--but that is NOT TRUE! Mostly because of the next quote:

I have been to 3 neurologist and 1 ALS specialist plus had an emg of my right side done which came out clean and my physical has been clean as well. The ALS specialist told me that its BFS. All three of them tell me to get ALS out of my mind and its my anxiety....

You have been given excellent advice...and 4 docs told you you are fine. Your kids deserve better--get off the internet and this type of sites, and go enjoy life.