vincy
09-06-17, 19:13
Hi guys. I've been a freaking mess the last week.
I'll start with this.
I've always had twitches in my right butt cheek, for as long as I can remember.
During a period of markedly high stress in mid-January, it was twitching more and more. I decided to google the cause of muscle twitching. You guys know how it goes from there.
I saw ALS, and instantly started twitching everywhere. Whole body, nonstop. This made me think I have ALS.
I made an appointment 2 weeks later with my primary care dr, my psychologist, and made an appointment to get an EMG since google said that's what I needed to rule that disease out.
Primary care dr. said I was fine. Psychologist said that that was textbook anxiety. EMG and NCV done on my right arm and leg were perfectly normal.
My anxiety calmed down a little bit, but not fully. About a month ago, I started freaking out again because I couldn't stay off google, and I kept making more symptoms for myself. I'd read a story about someone whose first symptoms were trouble swallowing, and then I felt like I couldn't swallow for the next day or two. Then I'd read someone's story about how they had this super-rare respiratory onset version, and I'd feel like I couldn't breathe for the next couple days.
I went back to a neurologist who specializes in neuromuscular diseases in my area. The best neurologist around, unless I drove all the way to my college to see their ALS specialists. He gave me a clinical exam, and everything was perfect. He ordered some blood tests, too, and thats where I started to panic.
One blood test, CK (Creatine Kinase), came back extremely high. Normal ranges are about 60-240 U/L. Mine was 3321 U/L. The secretary from his office called and said that he wanted another EMG.
I FREAKED out because I thought he must suspect something then. Not thinking, I assumed it just HAD to be ALS he was worried about. After some research, though, I found out was CK is. It is a sign of muscle damage, and while sometimes associated with things like muscular dystrophy, it is NOT associated with anything like ALS (at least not when it is that elevated).
I quickly found that my elevated CK level is almost SURELY from this (https://www.ncbi.nlm.nih.gov/pubmed/23354236).
Anywho. I was still extremely nervous about this EMG. This neuro was really good, and he had to have requested it for a reason (he just wanted to see if he could find why my CK was so high)
So as I'm laying down for him to start the EMG, I say "so after this will you be able to tell me I don't have ALS or anything like that to rest my mind?"
he replies, "ALS? Why would you be thinking about ALS?"
*short pause*
"Ah. You've been reading haven't you. Stop it. Trust me. That isn't even something we're considering."
Anyways. He did nerve conduction in all 4 limbs, and the needle EMG he did all 4 limbs, several spots each, as well as various spots on my trunk and neck. He did it so thoroughly because, he said, the elevated CK could be due to something that is pretty localized so he wanted to check everywhere to make sure. Afterwards, he told me that I ABSOLUTELY DO NOT have ALS. That isn't something under consideration. All the nerves in my whole body are perfect.
After this though, I couldn't stop googling, despite being pretty reassured. Then, I got to some stories about people whose bulbar onset ALS was somehow missed on their EMGs.
When I get extremely anxious, nearing panic attack, I have a habit of clenching my jaw very hard and also pressing my tongue against the roof of my mouth super hard. I had been doing this for more than 24 hours leading up to the EMG. The day after the EMG, I woke up, tongue sore as can be. I then started inspecting it to make sure I didn't have some kind of tongue symptoms that I should be worried about.
Since that point, I've been hyperaware of my tongue. It doesn't feel like it is ever sitting in the right place in my mouth, and I can't stop thinking about it. The part that is really messing with me, though, is that I feel like I'm not saying my words right, but I have asked 10+ people several times each, and everyone says I am talking EXACTLY the same as I always do.
I have about as strong a confirmation that I DO NOT have ALS as I can get, but I just keep moving on from symptom to symptom that I'm SURE is all chalked up to anxiety.
My psychologist is definitely helping me with stopping the trend of moving on to symptom to symptom and having my anxiety make it real, but I don't know what to do right now.
Does anyone else ever get hyperaware of their tongue like this? Did it cause problems speaking (whether real or in your head?) How did you stop?
Also, my tongue quivers a LOT when I hold it in this really specific position. Anyone else who has excessively examined their tongues due to ALS fears or something similar, did you ever find your tongue to quiver A LOT, almost to the point of looking similar to actual ALS patients tongue fasciculations, if you held it in a certain position? My tongue doesn't do anything at rest, and is relatively still when sticking it all the way out, so I know that it isn't actually fasciculations, but I still don't like seeing the way it quivers. Part of my fixation on my tongue is that since I know I am moving it in weird spots in my mouth, I sit there imagining it quivering looking crazy like it does in that spot, and it makes the problem worse.
Really, any comments from anybody on this will help me out. I have truly been letting my anxiety ruin my life since January. I don't leave my house much anymore. I have felt uncomfortable hanging out with my friends because all I am able to imagine, nonstop, is me slowly wasting away. I will greatly appreciate anything you guys have for me
Thank you,
Vinny
I'll start with this.
I've always had twitches in my right butt cheek, for as long as I can remember.
During a period of markedly high stress in mid-January, it was twitching more and more. I decided to google the cause of muscle twitching. You guys know how it goes from there.
I saw ALS, and instantly started twitching everywhere. Whole body, nonstop. This made me think I have ALS.
I made an appointment 2 weeks later with my primary care dr, my psychologist, and made an appointment to get an EMG since google said that's what I needed to rule that disease out.
Primary care dr. said I was fine. Psychologist said that that was textbook anxiety. EMG and NCV done on my right arm and leg were perfectly normal.
My anxiety calmed down a little bit, but not fully. About a month ago, I started freaking out again because I couldn't stay off google, and I kept making more symptoms for myself. I'd read a story about someone whose first symptoms were trouble swallowing, and then I felt like I couldn't swallow for the next day or two. Then I'd read someone's story about how they had this super-rare respiratory onset version, and I'd feel like I couldn't breathe for the next couple days.
I went back to a neurologist who specializes in neuromuscular diseases in my area. The best neurologist around, unless I drove all the way to my college to see their ALS specialists. He gave me a clinical exam, and everything was perfect. He ordered some blood tests, too, and thats where I started to panic.
One blood test, CK (Creatine Kinase), came back extremely high. Normal ranges are about 60-240 U/L. Mine was 3321 U/L. The secretary from his office called and said that he wanted another EMG.
I FREAKED out because I thought he must suspect something then. Not thinking, I assumed it just HAD to be ALS he was worried about. After some research, though, I found out was CK is. It is a sign of muscle damage, and while sometimes associated with things like muscular dystrophy, it is NOT associated with anything like ALS (at least not when it is that elevated).
I quickly found that my elevated CK level is almost SURELY from this (https://www.ncbi.nlm.nih.gov/pubmed/23354236).
Anywho. I was still extremely nervous about this EMG. This neuro was really good, and he had to have requested it for a reason (he just wanted to see if he could find why my CK was so high)
So as I'm laying down for him to start the EMG, I say "so after this will you be able to tell me I don't have ALS or anything like that to rest my mind?"
he replies, "ALS? Why would you be thinking about ALS?"
*short pause*
"Ah. You've been reading haven't you. Stop it. Trust me. That isn't even something we're considering."
Anyways. He did nerve conduction in all 4 limbs, and the needle EMG he did all 4 limbs, several spots each, as well as various spots on my trunk and neck. He did it so thoroughly because, he said, the elevated CK could be due to something that is pretty localized so he wanted to check everywhere to make sure. Afterwards, he told me that I ABSOLUTELY DO NOT have ALS. That isn't something under consideration. All the nerves in my whole body are perfect.
After this though, I couldn't stop googling, despite being pretty reassured. Then, I got to some stories about people whose bulbar onset ALS was somehow missed on their EMGs.
When I get extremely anxious, nearing panic attack, I have a habit of clenching my jaw very hard and also pressing my tongue against the roof of my mouth super hard. I had been doing this for more than 24 hours leading up to the EMG. The day after the EMG, I woke up, tongue sore as can be. I then started inspecting it to make sure I didn't have some kind of tongue symptoms that I should be worried about.
Since that point, I've been hyperaware of my tongue. It doesn't feel like it is ever sitting in the right place in my mouth, and I can't stop thinking about it. The part that is really messing with me, though, is that I feel like I'm not saying my words right, but I have asked 10+ people several times each, and everyone says I am talking EXACTLY the same as I always do.
I have about as strong a confirmation that I DO NOT have ALS as I can get, but I just keep moving on from symptom to symptom that I'm SURE is all chalked up to anxiety.
My psychologist is definitely helping me with stopping the trend of moving on to symptom to symptom and having my anxiety make it real, but I don't know what to do right now.
Does anyone else ever get hyperaware of their tongue like this? Did it cause problems speaking (whether real or in your head?) How did you stop?
Also, my tongue quivers a LOT when I hold it in this really specific position. Anyone else who has excessively examined their tongues due to ALS fears or something similar, did you ever find your tongue to quiver A LOT, almost to the point of looking similar to actual ALS patients tongue fasciculations, if you held it in a certain position? My tongue doesn't do anything at rest, and is relatively still when sticking it all the way out, so I know that it isn't actually fasciculations, but I still don't like seeing the way it quivers. Part of my fixation on my tongue is that since I know I am moving it in weird spots in my mouth, I sit there imagining it quivering looking crazy like it does in that spot, and it makes the problem worse.
Really, any comments from anybody on this will help me out. I have truly been letting my anxiety ruin my life since January. I don't leave my house much anymore. I have felt uncomfortable hanging out with my friends because all I am able to imagine, nonstop, is me slowly wasting away. I will greatly appreciate anything you guys have for me
Thank you,
Vinny