lucass
07-01-16, 13:20
I would very very appreciate if somebody took the time to read my story below, and maybe help me out a bit…
I’m a 32 year old male, living in the Netherlands.
No one really diagnosed me with BFS, but probably it is, if I listen to my reasonable mind. When my anxious mind speaks I am in the beginning of ALS.
I am reading your posts for quite some time, mainly to find reassurance. I am in my second ALS scare at the moment (when I saw somebody here mention SECOND scare my thought was: I am never to be scared of this anymore when I will get over it) But here I am, scared to the bone again…
It all started with a fast twitching muscle in my right arm, near the elbowpit. At the moment I was experiencing heavy panic attacks and health anxiety. I was getting dizzy after eating, so I started looking things up on the internet about dizziness. Then I stumbled on a website which wrote about your balance and muscles. I absurdly linked those two together: “dizzy, and twitching muscles, maybe it’s some kind of a disease of my muscles”. Soon I found out that the twitching was called fasciculations. Of course it did not take long to end up with ALS.
To reassure myself I looked up what kind of fasciculations occur with ALS and found an example on YouTube. It was reassuring indeed because what I experienced was nothing like that. This calmness lasted for a maximum of an hour because sitting at my desk I suddenly felt twitching in my calves!
From there it went downwards. I was checking and feeling my body, doing all kind of strength tests. Got trouble typing, couldn’t lift my right fingers properly. I was convinced of having this horrible disease. The scare went deeper and deeper, and of all health anxieties, this was definitely the worst!
Finally I went to my GP, who was reassuring and told me not to worry. He told me that it’s probably “cramp fasciculation syndrome”. The calmness lasted for half a day. I demanded seeing a neurologist. My GP did not want to refer me at first but finally agreed.
I will spare you the details of the hell I went through while waiting for the appointment but skip to the exam. In the hospital a young med student did all kind of checks on me. Then I got to speak to the neurologist. He told me that he wanted to see the twitching, but of course I couldn’t show them at that time. (at the time I had twitching in my calves only). He told me he wanted to do an EMG, and scheduled an appointment. My fear got worse off course. Why did he want to do an EMG? Another couple of weeks of hell… Then came the day of the EMG (with needles). He had to check my right calve twice (this side worried me) so I thought something was off. But he told me everything was fine. I asked him, do you have any clues for ALS? His answer was: At this moment I have nothing pointing to ALS. Off course the “at this moment” freaked me out, but after a week or two I finally calmed down.
I started a reconstruction in my house which lasted for six weeks. At the end I realized that when I am able to do all this work on my own, saw a neuro, everything should really be fine. The ALS scare went over… (I found a suspicious mole the same day, so a new anxiety adventure began…)
Later I found out that I did not twitch anymore, my focus was on something else and the twitching stopped. Again I could see how my mind fooled me.
Next episode
A period of a year and a half went by without the fear of having ALS, didn’t even had twitches, or didn’t notice them, and mid November 2015, after a period of serious health anxiety, I felt a sore spot on my left shoulder muscle. Immediately something I read before came up in my mind: “In ALS muscles can get sore because they taking over functions from other muscles, they are compensating.” I had a twitching eyelid for days (which I kind of accepted) but I linked the sore muscle and the twitching together. Immediately I warned myself: “Don’t even go there!”
Current problems:
Here’s how disturbingly powerful my anxiety gets: Within an hour I felt perceived weakness in my left hand and wrist. Later in my right thumb muscle. My right eyelid was going crazy and the rest of my body followed. I started feeling twitches in my legs, my abdomens, my thighs, my butt, my back, my ribs, my hands…. Everywhere! Once I read that twitching in thighs is more common in ALS so off course I am freaking out again.
New searches for weakness began and of course I found all kinds of sh*t!:
My right thumb muscle is weaker than my left one when I push it in a certain way. There is a large dent, which is a lot less deep on the left side.
When I carry my son on my right arm I feel a muscle getting really fatigued. I compared this muscle with the one on my left arm and it is a lot smaller! (to be exact, this muscle is called “brachioradialis”. and I am right handed! (I still can do pullups and so on when I work out)
I found my jaws to get really fatigued while chewing. There is also an asymetry in my jaw, my left jaw seems to be fuller or more muscular. I started to stumble over words… and sometimes I miss the letter L, S or D when I’m speaking. This really freaks me out. From the moment I considered bulbar onset, I have twitching in my throat, lips and jaw muscles…. I’m testing my tongue the whole time and found an asymmetry in it. When I pronounce the letter L, and continue sticking my tongue out from that point, it tends to the left, not straight forward. And this is freaking me out again. When I’m examining my tongue I see it is shaky.
I can do everything with it though, I can move it in every direction, twist and turn it, push out my cheeks, touch all my teeth and so on. But it gets fatigued quickly.
Is this BFS, anxiety, the horrible disease which I’m fearing? I’m going crazy again. I can’t sleep properly anymore because my fingers and arms jerk while I’m in bed.
I got cleared by a neuro about 1,5 year ago. But he did not check me on bulbar onset…
My wife tells me im crazy and tells me my mind is fooling me again. I want to see a neuro again, but she says il be crazy to do so… I really want to stop this!!!
I’m a 32 year old male, living in the Netherlands.
No one really diagnosed me with BFS, but probably it is, if I listen to my reasonable mind. When my anxious mind speaks I am in the beginning of ALS.
I am reading your posts for quite some time, mainly to find reassurance. I am in my second ALS scare at the moment (when I saw somebody here mention SECOND scare my thought was: I am never to be scared of this anymore when I will get over it) But here I am, scared to the bone again…
It all started with a fast twitching muscle in my right arm, near the elbowpit. At the moment I was experiencing heavy panic attacks and health anxiety. I was getting dizzy after eating, so I started looking things up on the internet about dizziness. Then I stumbled on a website which wrote about your balance and muscles. I absurdly linked those two together: “dizzy, and twitching muscles, maybe it’s some kind of a disease of my muscles”. Soon I found out that the twitching was called fasciculations. Of course it did not take long to end up with ALS.
To reassure myself I looked up what kind of fasciculations occur with ALS and found an example on YouTube. It was reassuring indeed because what I experienced was nothing like that. This calmness lasted for a maximum of an hour because sitting at my desk I suddenly felt twitching in my calves!
From there it went downwards. I was checking and feeling my body, doing all kind of strength tests. Got trouble typing, couldn’t lift my right fingers properly. I was convinced of having this horrible disease. The scare went deeper and deeper, and of all health anxieties, this was definitely the worst!
Finally I went to my GP, who was reassuring and told me not to worry. He told me that it’s probably “cramp fasciculation syndrome”. The calmness lasted for half a day. I demanded seeing a neurologist. My GP did not want to refer me at first but finally agreed.
I will spare you the details of the hell I went through while waiting for the appointment but skip to the exam. In the hospital a young med student did all kind of checks on me. Then I got to speak to the neurologist. He told me that he wanted to see the twitching, but of course I couldn’t show them at that time. (at the time I had twitching in my calves only). He told me he wanted to do an EMG, and scheduled an appointment. My fear got worse off course. Why did he want to do an EMG? Another couple of weeks of hell… Then came the day of the EMG (with needles). He had to check my right calve twice (this side worried me) so I thought something was off. But he told me everything was fine. I asked him, do you have any clues for ALS? His answer was: At this moment I have nothing pointing to ALS. Off course the “at this moment” freaked me out, but after a week or two I finally calmed down.
I started a reconstruction in my house which lasted for six weeks. At the end I realized that when I am able to do all this work on my own, saw a neuro, everything should really be fine. The ALS scare went over… (I found a suspicious mole the same day, so a new anxiety adventure began…)
Later I found out that I did not twitch anymore, my focus was on something else and the twitching stopped. Again I could see how my mind fooled me.
Next episode
A period of a year and a half went by without the fear of having ALS, didn’t even had twitches, or didn’t notice them, and mid November 2015, after a period of serious health anxiety, I felt a sore spot on my left shoulder muscle. Immediately something I read before came up in my mind: “In ALS muscles can get sore because they taking over functions from other muscles, they are compensating.” I had a twitching eyelid for days (which I kind of accepted) but I linked the sore muscle and the twitching together. Immediately I warned myself: “Don’t even go there!”
Current problems:
Here’s how disturbingly powerful my anxiety gets: Within an hour I felt perceived weakness in my left hand and wrist. Later in my right thumb muscle. My right eyelid was going crazy and the rest of my body followed. I started feeling twitches in my legs, my abdomens, my thighs, my butt, my back, my ribs, my hands…. Everywhere! Once I read that twitching in thighs is more common in ALS so off course I am freaking out again.
New searches for weakness began and of course I found all kinds of sh*t!:
My right thumb muscle is weaker than my left one when I push it in a certain way. There is a large dent, which is a lot less deep on the left side.
When I carry my son on my right arm I feel a muscle getting really fatigued. I compared this muscle with the one on my left arm and it is a lot smaller! (to be exact, this muscle is called “brachioradialis”. and I am right handed! (I still can do pullups and so on when I work out)
I found my jaws to get really fatigued while chewing. There is also an asymetry in my jaw, my left jaw seems to be fuller or more muscular. I started to stumble over words… and sometimes I miss the letter L, S or D when I’m speaking. This really freaks me out. From the moment I considered bulbar onset, I have twitching in my throat, lips and jaw muscles…. I’m testing my tongue the whole time and found an asymmetry in it. When I pronounce the letter L, and continue sticking my tongue out from that point, it tends to the left, not straight forward. And this is freaking me out again. When I’m examining my tongue I see it is shaky.
I can do everything with it though, I can move it in every direction, twist and turn it, push out my cheeks, touch all my teeth and so on. But it gets fatigued quickly.
Is this BFS, anxiety, the horrible disease which I’m fearing? I’m going crazy again. I can’t sleep properly anymore because my fingers and arms jerk while I’m in bed.
I got cleared by a neuro about 1,5 year ago. But he did not check me on bulbar onset…
My wife tells me im crazy and tells me my mind is fooling me again. I want to see a neuro again, but she says il be crazy to do so… I really want to stop this!!!