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WTHisThis

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I'd like to preface this by saying I am a self-proclaimed lurker on this site who also just endured what to me, in my limited little world, would consider to be the worst three weeks of my life. Out of respect for those who have a confirmed dx of this terrible disease, I never did dare to start a thread asking questions. So, instead, I just read through each and every thread, obsessively, for weeks as I waited to hear of my own fate....I literally went mad. I read and cried and cried and read and even giggled a little (and no this was not the result of pseudobulbar onset.) I cried because my heart broke for the many many lives effected, cut short, and impacted by ALS. I cried for myself because I was genuinely frightened, terrified, beside myself! I imagined my little girls who are just 6 and 5, growing up without me. Then I imagined my husband attempting to cook for them, surely they would starve. I lamented my life and basically threw it away in the same dumpster where all the other twitchers, itchers, buzzers, and zingers throw their lives when they've graduated Google University and dx'ed themselves with a terminal illness. So now that I am through with that VERY LONG (I prefer to call it thorough) preface, I will now share my story in the hopes that it will help someone with their heart in their hands as they examine each relentless twitch, twitch, twitch.

My story begins with a routine trip to my nuero to discuss my migraines that I have had since I was 8 y/o. Before I get into the meat, let me give you some a quick background medical/social history. I am a 26 y/o female, healthy, ok semi-healthy, I eat kale and stuff, but I also love me the bacon...but anyway, you catch my drift. I have no major medical problems. I have bulging discs from two babies and I have been struggling with increased migraines and anxiety for the past 6 months, so this is what I went to the nerve doc for, pretty boring stuff. Well while filling out the intake paperwork and being the good patient that I am, I decided to be very specific about other things that I had brushed off, but just in case, thought I should list. Among these symptoms were what I now know to be fasiculations, mainly in my rt calf (these eventually spread but i'll get to that in a bit.) I had also been only slightly concerned with rt. arm/shoulder/hand/wrist perceived weakness/tightness/pain that I noticed when doing things like push-ups and burpees a few months prior; rt. ankle perceived weakness/limited ROM (on extension), I had previously (like 2 years ago) torn a ligament in this same ankle and never nursed it back to health so it still swells during high-impact workouts....but regardless, I felt it was worth listing because a few weeks prior it kept sliding off of a pedal on a recumbant bike at the gym..and a few weeks before that, it started shaking when I tried applying pressure on the gas pedal in my car....these were moments of weakness, not fluid, constant, progressive weakness, but I didn't know the difference, and didn't know ALS yet, I was still in blissful ignorance at this point just pouring my heart out on that form, getting my copays worth of service.

Anywho, so my neuro examines me, and soon a heel-walk, toe-walk, and a few strength tests later, he told me I was not clinically weak and that my exam was pretty darn stellar, well he didn't say that exactly...he said something like "you're exam is normal but your symptoms are worrisome and they could be nothing or they could be something serious, so I am going to order an EMG/NVC and an MRI of your head." And just like that he walked out, at this stage I was still delightfully ignorant because those letters, "EMG" meant absolutely nothing to me. Never even heard of it. But that was going to change. I went home, fed my kids, and then I let it sink in...my neuro's words replayed in my head like a creepy echoey voice in a cheaply made 80s horror film...."it COULD BE something serious...EMG..." So I did what any respectable millenial would do, I googled "what is an EMG used to rule out." Then I thought, hell, while we're here, let' google these symptoms...so I started with the twitches as I felt they were the most notable and strange of all the others. You already know how this part went, search results were ALS, MND, Lou Gherig's.......and so the mania began. I sat there, for weeks, comparing each symptom, which at first were minimal (as mentioned above).Within TWO DAYS of my neuro appt and subsequent google research, my twitching had procreated and had twitchy babies that were now taking over all of my limbs, mostly in my bil. calves,bil. shoulders, rt. butt cheek (those are um...interesting), and abs (like baby flutters or kicks). Each twitch would send me farther over the edge. Before you know it, I was mourning my short lived life, regretting things I have not accomplished, and hugging my babies tighter. My calves started getting charlie horses and one day last week while simply driving in my car, my whole neck and THROAT spasmed so bad that I was taken by ambulance to the hospital because I felt that I was being strangled and could not breathe. I attributed this to spasticity and allowed it to perpetuate my own demise. I still have the neck and arm pain from the spasm.

I googled spasticty, calf cramps, toe cramps, and even took cell phone videos of my tongue. By this time I was so convinced that I called my mom, cried to her, admitted that I was so terrified that this disease had gotten a hold of me, then I cried to her about the stories and victims of ALS I read about on here and I mourned for them.

I FELT these twitches, I FELT these cramps, I had a spasm attack which i'd never had before, my symptoms which had started on one side in my rt arm and rt leg, were now in all four limbs and my throat. I drank water and felt as though I was swallowing something after I sipped it, I cried some more, even more convinced. I called my Neuro's office THREE times begging them to move my EMG to a sooner date. I lost 8 lbs, I could not eat, I did not sleep, I took valium for 4 days for my spasm and my nerves and even that did not remedy the nightmare I was living through. I regretted ever googling EMG in the first place, but yet I continued to lurk. Soon I started analyzing my thighs since they were now twitching too; I discovered I could not engage my lt. quad muscle like I could on my rt. I wondered if my sudden weight-loss was from atrophy instead of anxiety. Every night I woke up 4-5 times, and each time I felt the very REAL thump of a twitch along with my aching neck. I taught myself all about the Thenar muscle and examined it daily for atrophy since this was where much of my cramping and weakness was.

Finally, today came, I had my emg. I cried again (out of fear) on the table during the nerve conduction part ( I am not a crier AT ALL so this was getting ridiculous.) I begged the tech for a thumbs up, a wink, a smoke signal, sun-dance, something to let me know I was going to be OK; but like a good professional, she refused. She got my neuro and let me tell you, I have never been so ready for someone to stick needles in my muscles like I was at that very moment! I had already read that white noise meant good and popping meant bad....so lo and behold, I nearly had a heart attack when my neuro went through the same muscle in my rt forearm, pleading with me to "relax it" as the machine crackled and popped....those were painful sounds, my heart fell, the internet told me this means I surely have ALS...I wanted to throw-up. He stuck more needles more places and told me to flex, some had white noise, so had white noise with some pops, none of them mattered beacause I already knew. I had prayed on the way there, promised God my life, apologized for my transgressions as well as my aloofness towards the gifts in my life, and I begged him to give me a clean EMG....and now here I was POPPING on the stupid machine that you don't wanna be POPPING ON!

It was done in a matter of minutes...my neuro looked at me and said, "I do not see anything but some benign fasiculations and I think your percieved weakness is a spine issue...you can relax now." I BAWLED and then I asked him for a hug; his face told me that was probably the first time he's been asked for a hug, but I needed it.

I see many others out there who like me have very REAL symptoms that are also very vague and so we get caught up in self diagnosing through the internet. I also see many very sick people on here going out of their way to help those of us seeking comfort and reassurance as we try to make sense of these symptoms. I should have known that twitches and pain spreading to all four limbs in a matter of 2-3 weeks was NOT a classic progression rate of ALS, but still, my emotional state trumped any rational thought I could have....so I get it, and that is why I wanted to share this. I had REAL symptoms, but they turned out to be nothing. Turns out I did not get a rare disease, made more rare by being only 26 y/o AND female, and also have an even RARER onset and progression of 3 weeks to 4 limbs. :shock:

What I did gain was an appreciation for my life, my kids, my health, my docs, and this forum. I gained a compassion for those who have been dealt this card, and my heart breaks for all the PALS. Exactly one week before all of this started, I sat across from a Psychiatrist who I went to see for anxiety and told her that I get so stressed and overwhelmed by my life that I sometimes do not have anything left to give to my kids or my husband or my job or anyone for that matter.....this was a wake up call, a life-altering brush with a disease I do not wish anyone to have. I feel it is my duty to do my part in raising awareness and contributing to finding a cure, even volunteering to just be there for PALS.

I know I went off on tangents, so I apologize, I am wordy, but I hope that if you are having symptoms, this can serve as a slice of hope that your symptoms do not HAVE to mean a terminal illness. Much love to PALS, caregivers, and everyone in between. <3
 

lgelb

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Thanks for checking in, Gulf, and glad you got the news that everyone wants to hear.

Best,
Laurie
 

Lkaibel

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I think you just helped a lot of frightened people. Thank you. Live long and prosper:)
 

Nuts

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Congratulations on the good news! I hope your story helps others who are experiencing the same fear you felt.
Becky
 

Nikki J

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Thanks for sharing. You are a great writer btw. Held my interest even though I could tell how it was going to end! Have a wonderful life!
 

WTHisThis

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Thanks guys! I hope it can bring anyone who is riddled with anxiety back down to Earth. Best wishes to you all!
 
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