Emscared
New member
- Joined
- Nov 23, 2022
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hi everyone.
I posted a month ago because of three +1 fibs on an EMG. Nothing else and no clinical signs of weakness or anything else even relating to ALS. Had muscle tension and vertigo and a slight tremor in my left hand sometimes when I was nervous.
I have been getting better, no vertigo, muscles feeling less tense but still some popping in my shoulders with movement, but I just wanted to tell everyone why I ended up here.
I went to an internist in NYC that had fine reviews on zocdoc and took my insurance. She did a neuro work up and said everything seemed fine but she was just gonna throw every test at it cause “that’s what doctors do”
So I do blood tests, ct of the head, a seizure test, ultrasounds of my neck, some blood flood test, and an EMG. Still, there was no reason given to me why she did all this.
I do the EMG, it’s a technician, I’m not even laying down, I’m sitting uncomfortably on the edge of a table, and I am in no way relaxed. I don't know if I ever even got my muscles to fully relax because I had no idea what was going on. Also it should be noted that I had COVID less than two weeks before the EMG.
Then a week later I get this message from the ordering doctor in my portal. No call, no anything.
I’m stunned obviously considering I do not have the symptoms of either disease.
I, luckily, have a friend whose uncle is a neurologist, and I send him this portal message. He says nothing she is saying makes a neurological sense. MS and ALS are completely different and that without weakness ALS is ruled out.
Minutes late I get the EMG results and sends them in to him as well and he says the fibs could absolutely be from me being so not relaxed. He also says based on my symtoms he wants me to ask why an EMG was even ordered.
I make a follow up with the original internist, and she is like laughing and talking like she didn’t just send me the scariest portal message ever. I ask why the EMG was ordered and she says and I quote “I don’t know you tell us stuff we order tests like who knows!” I’m obviously shocked. Then she says “well umm you said you had a tremor so that’s why.” Then I ask her, “do you think I have something serious?”
And she says “no but like we have to say that or you’ll come yell at me ahaha.” Like what?!
I come to find out, she is not even the one who looked at the results and made these calls, a pain management specialist did, from the same clinic did. Not even a neurologist.
I also was lucky enough to speak to a friend who works at the Mayo Clinic. She is not a neurologist but she listened to this story, looked at my EMG and thought it is completely horrible that this was said to me and based on these EMG results she would NEVER suggest anything like ALS.
The whole thing has been so horrific.
I ended up canceling the remaining tests that this doctor had ordered because this place is obviously not to be trusted. It was also all on Medicaid and free and in house testing so I feel odd about that as well.
You all really helped to be able to think clearer about all this. I am forever grateful and will be making a donation.
These are my questions:
I do still have a lot of fear and I guess I’m kinda wondering if anyone has heard of fibs just going away on their own?
Do you think I should seek out another opinion? Or just try to move on with my life?
I’m starting lexapro as soon as it comes in and doing therapy.
I have attached my original portal message, email exchange with the neurologist, and my EMG report prepared by the pain management doctor who I never met.
I cannot thank you enough.
I posted a month ago because of three +1 fibs on an EMG. Nothing else and no clinical signs of weakness or anything else even relating to ALS. Had muscle tension and vertigo and a slight tremor in my left hand sometimes when I was nervous.
I have been getting better, no vertigo, muscles feeling less tense but still some popping in my shoulders with movement, but I just wanted to tell everyone why I ended up here.
I went to an internist in NYC that had fine reviews on zocdoc and took my insurance. She did a neuro work up and said everything seemed fine but she was just gonna throw every test at it cause “that’s what doctors do”
So I do blood tests, ct of the head, a seizure test, ultrasounds of my neck, some blood flood test, and an EMG. Still, there was no reason given to me why she did all this.
I do the EMG, it’s a technician, I’m not even laying down, I’m sitting uncomfortably on the edge of a table, and I am in no way relaxed. I don't know if I ever even got my muscles to fully relax because I had no idea what was going on. Also it should be noted that I had COVID less than two weeks before the EMG.
Then a week later I get this message from the ordering doctor in my portal. No call, no anything.
I’m stunned obviously considering I do not have the symptoms of either disease.
I, luckily, have a friend whose uncle is a neurologist, and I send him this portal message. He says nothing she is saying makes a neurological sense. MS and ALS are completely different and that without weakness ALS is ruled out.
Minutes late I get the EMG results and sends them in to him as well and he says the fibs could absolutely be from me being so not relaxed. He also says based on my symtoms he wants me to ask why an EMG was even ordered.
I make a follow up with the original internist, and she is like laughing and talking like she didn’t just send me the scariest portal message ever. I ask why the EMG was ordered and she says and I quote “I don’t know you tell us stuff we order tests like who knows!” I’m obviously shocked. Then she says “well umm you said you had a tremor so that’s why.” Then I ask her, “do you think I have something serious?”
And she says “no but like we have to say that or you’ll come yell at me ahaha.” Like what?!
I come to find out, she is not even the one who looked at the results and made these calls, a pain management specialist did, from the same clinic did. Not even a neurologist.
I also was lucky enough to speak to a friend who works at the Mayo Clinic. She is not a neurologist but she listened to this story, looked at my EMG and thought it is completely horrible that this was said to me and based on these EMG results she would NEVER suggest anything like ALS.
The whole thing has been so horrific.
I ended up canceling the remaining tests that this doctor had ordered because this place is obviously not to be trusted. It was also all on Medicaid and free and in house testing so I feel odd about that as well.
You all really helped to be able to think clearer about all this. I am forever grateful and will be making a donation.
These are my questions:
I do still have a lot of fear and I guess I’m kinda wondering if anyone has heard of fibs just going away on their own?
Do you think I should seek out another opinion? Or just try to move on with my life?
I’m starting lexapro as soon as it comes in and doing therapy.
I have attached my original portal message, email exchange with the neurologist, and my EMG report prepared by the pain management doctor who I never met.
I cannot thank you enough.
