The reason I was so scared.

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Emscared

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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.
 

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Obviously go see another doctor.
That is not an EMG we see in ALS.
 
So you think after taking in this information that I can put this behind me, @affected ?
Like this wouldn’t be a case of the EMG being done too early?
Can fibs just go away?
I just feel so rocked by this horrible doctor experience that I am scared to seek out anything else considering I feel way better overall.

Curious if anyone else has any more thoughts on this whole story as well.

Thank you so incredibly much.
 
Emscared, this really isn't the place to speculate about results once cleared of ALS. We're set up to support those with ALS and their caregivers and have limited capacity outside of the information and reassurance you've already been provided. If you have specific questions about your non-ALS results you must consult with your doctor. If you are not satisfied with their responses or your experience with them, it is up to you to find another one who you can talk with. Please understand this forum really can't do much more for you, as what you are asking is outside of what its intended function is.

Hopefully you will be able to find the answers you are looking for. It sounds like you also have a personal connection who is willing to discuss your health with you and who may be better suited to support you than a group of strangers on the internet who have limited capacity to help.

Take care
 
We have done all we can.
You are cleared of ALS and do not have the symptoms of ALS.
All the very best, work with doctors and always ask them of new concerns rather than strangers.
 
I really appreciate the reply’s everyone, the kindness will never be underestimated.

I saw on some old posts I believe from @Nikki J that you have seen many times people posted EMGS like mine and they ended up being completely fine.
Is that true?
Do you think I have nothing to worry about as well? I really value your insight.
I have been told from many people here that this is not even close to an EMG that is seen in ALS, but there is no chance it’s just early right?

It’s also been a year since having neck and shoulder issues with many times where they feel totally fine, (I have gotten a couple of Charlie horses this year but only after nights of having too much to drink or being outside and active all day in extremely hot weather) so that combined with no weakness, loss of function, and my EMG results clear me from ALS right?

I’m sorry, I just have been living in constantly fear that every sensation of daily life and performing (I’m an actor) is something deadly.
That doctor really spooked me.

I promise these are the last questions I have. Thank you so much.
 
What part of 'we have done all we can' did not make sense?

To answer you:
1. yes so many times this happens
2. yes, nothing to worry about
3. nope, no chance
4. yes, you have been cleared.

You truly need to stop now and go see your doctor for assistance.
 
Emscared, you joined Nov 23, You've on the site nearly everyday. Yes, you've scoured countless
threads and replies. You've got replies from the most knowledgeable ALS members.

You've been cleared of ALS. Those were your last questions and they have been answered above
and before. There isn't another reason to post again or linger here reading old threads.

You do not have ALS. This is an ALS Forum. Other forums can address your Health Anxiety.
 
Em, I will be closing this thread. Please do not open another. Seek help for your anxiety. We are not dismissing your symptoms, only telling you that your non ALS symptoms must be addressed by you with your doctors. This forum is simply not set up to provide the kind of reassurance you are seeking.

Please take care.
 
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