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KiraM

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Hey all, hope you’re doing good today. Just to prefise, I’ve calmed down since my last post, and I’m taking the necessary steps to find out what’s wrong with me whether it be anxiety or something else. So I got my EMG today at NMC, by a neurologist that specializes in ALS/MND, so I’m sure it was done well. He did 4 on my left leg and 3 on my left arm and on the muscle between my thumb and pointer.

To be honest it was very strange feeling, I didn’t like it, and it hurt afterwords. Although he wouldn’t answer any of my questions during the test, besides me asking if it was supposed to make such a loud noise when I contracted the muscle, to which he said “yes, you will hear a noise.” So I don’t have my results yet, I will be getting them on Monday.

During the EMG I was very careful in listening and viewing the machine. When the needle was inserted there was no activity, when he moved the needle around there was a bit of activity, but when I flexed the muscle it went crazy. Sounded very loud, and the waves turned into fast tall waves, that were a short distance from each other. Now I know I can’t determine the outcome of the EMG since I am in no way qualified in reading it, but it does make me feel uneasy.

I read that it will sound like rain falling on tin, and this is what it sounded like, but I’m not sure if that was only when the muscle contracts, could anyone specify? Thank you so much, I’m hanging in there until Monday.
 
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KarenNWendyn

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Hang in there until you get the report. We are not electromyographers. We also can’t draw conclusions from your very subjective description of what you heard. At this point, it’s best to relax and enjoy your weekend.
 

Nikki J

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That sounds completely normal from what you describe. Because of research study participation I have had EMGs both before and after symptom onset. What you said is what happened with normal results.

Enjoy your weekend
 

Bestfriends14

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The EMG sounds normal. You are in no way, nor is anyone here, totally qualified to interpret subjective results. Since your symptoms and EMG do not point to.ALS, I wish for your own sanity, to let go of this ALS worry. Enjoy the weekend and take good care. Celebrate your good physical health.
 
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lgelb

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Sounds like a normal EMG from your description. I expect Monday will confirm.

Don't hang in -- get out and about. It's the weekend!

Best,
Laurie
 

KiraM

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Oh my goodness thank you all so much, Nikki it’s wondeful to know that considering you’ve had so many EMGs. And that all of you think it’s normal is just wondeful. I’m gonna follow up here on Monday with probable good news, see you then, have an amazing weekend
 

KiraM

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Just a quick update for anyone who is thinking of me (if you are, I truly appreciate it). I’m thinking of you guys a lot and hoping you’re doing well. I didn’t get my EMG results today despite being told they’d be there. The specialist and NMC aren’t allowed to give me my results and they have to send it to my neuro. I’m so grateful for my mother and boyfriend who've been so supportive and loving. I’m just so fed up with how long this stuff takes (I know some of you had waited years and I can’t even imagine..) so I suppose 3 months isn’t much. Although I managed to become sick with a cold now. Coughing up a little blood with sore throat and clogged ears, along with a nice headache, so that’s fun! They said they’ll have my results tomorrow and I’m hoping for the best );
 

KiraM

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Still don’t have results, this place is so untrustworthy! I think I already know what the results will say though..I’ve kinda given up hope at this point. Has anyone had my symptoms without an Als diagnosis? Tight legs (can’t stand for more than 30 mins without needing to sit down), fasics all over, excess saliva, very weak arm? I’m losing hope..
 

ShiftKicker

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Kira, please wait till you have your results. No more posting, as the folks here have spent a fair amount of time already trying to help you understand this is not ALS.
 

Nikki J

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I would add bad news travels fast. Do you really believe that if your emg had indicated ALS or anything serious that the EMG doctor would not have been on the phone to the ordering physician right away?
 

KiraM

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I understand ShiftKicker, trust me if I felt better or okay I wouldn’t be here, it’s so hard with these symptoms and no diagnosis




Yes Nikki, that’s true and hopefully true in my case.


If I feel I am having trouble breathing due to a weak feeling and lots of phlegm built up, would I be waking up in the middle of the night gasping for air? (I haven’t) I just have this feeling during the day. I’ve questioned going to the ER because of it but then remember the ER never can really help me
 

ShiftKicker

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Kira, time to revisit your doctor if you have questions. This forum really is not for you. Your hours of searching and hanging out here and posting is not helping your anxiety and I will once again ask you to stop posting until you receive your results.
 

Bestfriends14

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Kira,

Knock it off now. You've been asked and asked to stop posting until you have EMG results in hand. This means not adding new questions and symptoms. You don't have ALS, yet you're asking those who do and their caregivers, to hand hold you through your health anxiety. To be blunt, it's bordering on incredibly self absorbed.

It's best at this time to perhaps querie your health anxiety questions on an appropriate forum, or better still, with your parents.
 

KiraM

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I have separated this into parts for your reading, since it’s very long.

1-explanation
2-symptoms
3-more symptoms
4-what is wrong with me pt1
5-for the PALS/CALS
6-what is wrong with me pt2
7-a promise to you
8-for the anxious
9-for the PALS/CALS





1- I got my EMG results today. Today is the day my life has took a turn. In the 3 months of my ongoing symptoms, I lost hope. I knew deep down that I indeed had this dreadful disease, and that I wouldn’t live to achieve my dreams for the future. I knew there was nothing I could do to stop it from taking over my body. I told myself before I knew for sure that I would face it and live my best life even though I had it, like those of you do here.



2-Every twitch was a reminder, every time I stood up was a reminder, every time I sat up even. My body is weaker than it once was, that’s for certain. The twitching is constant and continues to be constant, every 30 seconds I will twitch. The places in which I twitch most are my weakest places. I have lots of excess saliva and phlegm.



3-Of course, from the moment I had googled ALS I was in a death grip. All of my symptoms matched, and when I got a new symptom it would match as well. I really couldn’t believe this had all happened in just 3 months, I must be rapid progression I thought.


4-Mental illness is a serious thing, it can ruin lives. I knew better, I knew my symptoms were not from stress or anxiety, for they’re all too real. You know the difference between actual symptoms of a terminal disease Vs silly old anxiety. For anxiety wouldn’t have progressive symptoms. It isn’t possible, or so I thought


5-My EMG is clean. For all of the kind souls who were commenting on my posts that isn’t a shock at all. I will never be able to repay the debt I owe to all of you. I’m indeed ashamed of myself, and feel incredibly guilty for even posting here. Truly this isn’t a place for anxiety ridden people, it is the worst place to be. Trust me, I have literally read every single post in the DIHALS forum, every one.


6-I am sick, but not in a terminal way. My mind is sick. I now recognize this, and I will begin getting help very soon. Neurological disorders do not run in my family, mental illness does.


7-I’m disappointed in myself, but now have a new meaning to life. I’ve always wanted to be a doctor ever since I was small, and now I know what I want to do. I want to help find cures, I want to die at an old age knowing that this disease is no longer incurable. That is my new mission. And I want others to figure out a cure before I even get into UNM.


8-Shame on me for not believing these amazing people. You are my biggest inspiration, and I will spend the rest of my life fighting for you all when I have my degree. To those of you reading who aren’t affected by this disease and fear it, it’s not too late. You may twitch, have weakness, etc, you must trust your doctor. You have no idea how much they know, and how much you DONT. I am very very silly for not taking my neurologist seriously, with his 50+ years of experience. I am also very sick in not taking what the people here say seriously. My advice would be, if you cannot deal with your symptoms, go to your doctor, believe what they say, if need be ask for a neuro, IF you NEED the EMG, if you cannot live your life without it then get it, because it puts your fears to rest once and for all. Sometimes the zebras need to be ruled out before the horses, it helps you know that what you’re suffering from is curable. My EMG showed that my muscles are HEALTHIER than a normal person my age, to my shock this is true.




9-So I will leave here with that. I knew I had ALS before I even went to my neurologist. I don’t have ALS, and I probably never will. You are all my inspiration, and you have inspired me to work as hard as I can to contribute to this world. I say with true meaning, thank you so much, bless you all.
 

Nikki J

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Good luck Kira. Please devote yourself to treating your health anxiety and any other mental health issues you have. As I said to you before this can steal your life. Medicine is a wonderful and challenging career. You need to conquer this to succeed

Best of luck for a long happy and healthy life
 
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