A Tale for the Worried Well

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Waker

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Learn about ALS
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QC
I just got a clean EMG.

For the last three months, I have spent my days obsessing over the three-letter disease. And I mean obsessing. Spending all my days on forums, Google, all that stuff. Not eating, not drinking. I was 200% convinced I had it. I looked up life insurance, planned to record videos for my son, researched assisted death, even thought about killing myself to be blunt. In my mind I would be dying soon and there was no question about it.

Fasciculations everywhere constantly. Myoclonic jerks. Shaky limbs. Weakness. Burning pain in my legs. Hyperreflexia. Tremors. A total absolute mess physically and mentally. People said I was just anxious and I screamed they were in denial. I told my girlfriend she needed to find someone else. I fucked my life up over this.

Then I got to the hospital this morning for my EMG. I woke up at 4, it was still dark outside. My appointment was at 7:30. I took the bus and it’s like a 90-minute ride. I was looking at people thinking they are lucky they will get to live. That they didn’t know by looking at me that I was a dead man walking.

I arrived at the hospital and the department had just opened. The lights were still barely on. It fit my mood perfectly. I thought about how I would announce the news to my mother and pregnant girlfriend. I almost threw up in the little changing room. I was a few minutes away from receiving confirmation of the worst diagnosis you can have.

Then we did the first part of the test. They electrocuted me in various muscles. I lay there completely vulnerable and paralyzed in fear. Then the neurologist came in for the second part.

I asked her if she would tell me if I had ALS after the test. She said "I can already tell you I don’t think you have it at all." I was shocked. She seemed so confident. I asked myself whether or not she was even competent. Then she did a complete neurological exam. Very thorough and complete.

And then the EMG started. THE test. The golden standard of ALS diagnosis.

She poked me with needles in my muscles as I listened to the machine and tried to guess the results by interpreting the sounds it made even though I have fucking zero knowledge of electromyography.

The test ended and she told me to sit down. She said the test was 100% normal. Not a single anomaly. I asked "You mean except fasciculations?" She said "Not even one fasciculation. You can’t get a better result. Your clinical exam and EMG are perfect."

Then she said what I had was in the vein of Functional Neurological Disorder secondary to conversion disorder from severe anxiety. She said "I know you will doubt me. You will think the test was done too early. You will want another EMG in 2 months. You will cling on to this because your symptoms will continue. I see this all the time. But believe me, you need therapy for your anxiety and you need it badly."

She went on to say she knew right off the bat I didn’t have ALS. She said when you reach that level of anxiety and neurological manifestations that it will take a lot of time to recover fully. She said she gets lot of medical students coming in with diffuse fasciculations and thinking they have ALS.

She also said she has lots of fasciculations herself and that they are meaningless in ALS diagnosis and that the Internet completely exaggerates their clinical significance. She said ALS fasciculations tend to be focal and very fine to the point of not being noticed by the patient.

She even said "100% you don’t have ALS and are not more at risk of getting it later." She actually said 100% which doctors never do. I asked her about fasciculations preceding weakness by years and she brushed all those theories off as anxiety fodder. Basically she said if you have a clean clinical and EMG months after fasciculations started then you have no ALS and need to drop that ball fast before you lose everything to ALS phobia.

As I was walking home, enjoying my first coffee in three months and thinking about my future I started thinking "But what about muscular dystrophy? What about this guy that had 4 clean EMG’s before diagnosis?" The neurologist was right. After three GP’s, two rheumatologists, two neurologists and a clean EMG clearing me of ALS, I was still doubting my reality. I was still thinking "But my symptoms are real!"

This is the nature of severe health anxiety. It has no limits. It can create its own reality. It can make you sick and then make you sick again.

Take it from me. I hope my story will be a lesson. I was convinced I had the disease. I almost messed my life up. Stopped seeing friends. Made my girlfriend’s pregnancy terrible.

And I didn’t even have a single fasciculation on my perfect EMG.
 
Congratulations!

what a great doctor! I am glad she told you all that We also see the doubters after the emg. Too early, wrong muscles etc.

she is right and we say it here NORMAL clinical exam plus EMG is not ALS. ( side note hyper reflexes do not consititute an abnormal clinical). And the normal exam is really enough anyway.

you are a great writer btw.

take your gift of good health and enjoy your baby. Concentrate on your girlfriend.
 
Congratulations and thank you for a well-written piece that I hope will help others.

Enjoy your life and stay away from this forum.
 
Thanks guys! I honestly can’t find words to convey how much respect I have for you. And I’m not just saying this. Your kindness is incredible. You are all an example of strength and pure altruism.

I want to donate to this board. Could you tell me how to do this?
 
Scroll up to the top. On the left see a white button with forum in blue letters. Go to the middle of the row there is a donate button. Thank you
 
Thank you it’s done! I will try to donate monthly the same amount.
 
I just discovered that the neurologist who did my evaluation is an ALS specialist in the biggest university hospital in Montreal. I guess she really knows ALS... And still I think but what if she is wrong? Even though she diagnoses and sees ALS patients every day.
 
I just discovered that the neurologist who did my evaluation is an ALS specialist in the biggest university hospital in Montreal. I guess she really knows ALS... And still I think but what if she is wrong? Even though she diagnoses and sees ALS patients every day.
Keep reading your first post in this thread.

Part of the pathology of severe health anxiety is to not believe the doctor. I notice you have been on this site today, reading other posts. That’s a sign that you haven’t let go of ALS.

Letting go will likely be a process for you. It’s likely you may need some help in the form of medication for anxiety. Some of the SSRI antidepressants are very good for reducing anxiety. You also need a new focus. Maybe taking up a new hobby, working out, volunteering.... Spending time with your girlfriend and supporting her with her pregnancy...

in any case, I’m glad you don’t have ALS. But you’re staying on a website asking people who do to help you. Time to get help elsewhere. I’m closing your thread. I truly wish you the best.
 
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