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View Full Version : A Sad Tale of ALS Phobia... That Ends Well



Seymour
25-10-19, 16:04
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 ****ed 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 itís like a 90-minute ride. I was looking at people thinking they are lucky they will get to live. That they didnít 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 donít 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 ****ing 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 canít 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 didnít 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 donít 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 EMGís before diagnosis?" The neurologist was right. After three GPís, 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 girlfriendís pregnancy terrible.


And I didnít even have a single fasciculation on my perfect EMG.

nomorepanic
25-10-19, 17:34
and we all told you this over and over so please please move on from it now.

Seymour
25-10-19, 19:32
and we all told you this over and over so please please move on from it now.

I’m just trying to help by sharing a positive story. Is that a problem?

Carys
25-10-19, 19:46
....but there is something even bigger moral to this story, everyone - from doctors, to people on here, to people who had had ALS told you time and time again that you didn't have the disease and gave many reasons for that. Although of course its great that the EMG showed nothing (an EMG that the neurologist didn't even think you should have) which is entirely expected but it shouldn't have been necessary to have the full tests that you had. It should have been enough Alex that everyone leading up to today said NO WAY is it that. I know that you are sharing a story thinking its positive, and of course to your mind it is, but to my mind this should have never even got to this point. You need to now work on your HA, so the next illness you have doesn't lead to the same months on months on months of obsession and putting your life on hold and imagining death every single day. Time to focus 100 percent on your girlfriend and being a 'nearly' father now.


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!"

Yep, you've already doubted so many people for so long, and this won't be an end to it until you work on your mental health.

Seymour
25-10-19, 21:03
I don’t wanna be that guy who does 10 EMG’s... Conversion disorder is real.

nomorepanic
25-10-19, 21:26
I’m just trying to help by sharing a positive story. Is that a problem?
Did I say it was a problem?

I am saying that no-one even doubted you didn't have ALS so now you can move on from it - but not to something new.

Fishmanpa
26-10-19, 00:19
I usually post a "Told Ya So" GIF courtesy of the "Told Ya So Gang" but in this instance, the best "Told You So" as well as a source of advice and motivation to address your anxiety is in your previous thread (https://www.nomorepanic.co.uk/showthread.php?231588-Sore-weak-legs). The Seymour that wrote this post, to me, sounds (virtually) like a different person. Go back and read through that thread. It's a vivid glimpse of how your anxiety influenced your mindset and behavior. Read how you did everything you could to feed your dragon and keep the fear alive. I know I was blunt in my replies but I stand by them 100%. You can't allow yourself to get sucked into the rabbit hole like that ever again. Use it as inspiration to fight the dragon. Comeback with addendums to your post on how you're slaying him.

Positive thoughts

darkside4k
30-10-19, 21:38
Wow, just saw this after posting my own EMG results - also clean - after two months of muscle pain and burning and some twitching. Congratulations on your good result. I sincerely hope we can move past this fear after these results.

darkside4k
04-11-19, 19:08
I'm wondering how you are doing Seymour. I'm finding myself still fearing I have a serious disease even after my clean EMG to be honest. I've started having tiny little muscle jerks in various places around my body.

leoguaje7
12-11-19, 13:10
i'm wondering how you are doing seymour. I'm finding myself still fearing i have a serious disease even after my clean emg to be honest. I've started having tiny little muscle jerks in various places around my body.

a n x i e t y

Carys
12-11-19, 14:26
I've started having tiny little muscle jerks in various places around my body.

You and half the people on the HA forum - so what does that tell you ?