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Thegabe101

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Hello everyone. I have posted here before. I would like to post one final time and share the end of my story in hopes that it will help those who come here in future in a similar situation to mine. This will be long, so please don't feel like you need to read it- I am not seeking help, but just want to share because I'm hoping it will help others.

I have posted here twice before. Last September, after contracting a hideous and strange virus while living in China, I had awful stomach problems, muscle pain, fatigue, rashes, etc. Just the worst virus I could imagine. Then, one day I woke up and was feeling better. I remember it clearly because it was 9/11, in fact. That day, I got out of bed, walked to get my daily breakfast noodles, and realized my leg felt strange. I had never felt anything like it before- it was as if my foot were made of lead, and my leg was "disattached" or "distant" from my body. I found this incredibly strange and was quite disconcerted, considering there was no pain or soreness (something I am very used to in my legs from playing basketball daily).

Upon getting home and lying down, I felt the oddest thing. It felt like there was twitching in my left calf. I looked and there was. Sporadic, not rhythmic, and small. I immediately freaked out because I was very familiar with Lou Gehrig's Disease as my mom's best friend is currently going through it. I connected the twitching to the strange feeling in my leg and started to panic.

I should preface the following ~9 months of panic by stating I am not usually sensationalistic, hyperbolic, or an exaggerator of any sort. I am (I'd like to think) pretty reasonable and used that reason to tell myself it was very unlikely that I had ALS. However, as any of you going through this fear or ALS panic know, it often gets the best of people, even the mentally strong. I couldn't resist the panic, especially as the perceived weakness in my leg remained and the twitches spread to every (EVERY) muscle in my body (yes, including tongue for you tongue twitchers out there).

By November, i had had two EMGs in China, seen every Western leaning neurologist in Ningbo, and been told consistently that I did not have ALS. Unsatisfied and convinced I had early onset due to the virus I had, it was time for me to come home from China. I couldn't deal with an issue this complex in Chinese and was worried that the EMGs were not legitimate, despite reassurances from Chinese friends I trusted that China's medicine is top notch these days. I threw away everything- a great job, a luxurious apartment on the cheap, the love of my life, my sanity- thinking that my life as I knew it was over and I needed to get the diagnosis confirmed.

Upon arriving home, I immediately arranged to see Dr. Xuan Wu, a top notch neurologist at a certfied ALS clinic back in Seattle. My symptoms had been increasing, and they were (a key part of this story) OBJECTIVE, but NOT ALS. I had massive (and continue to and probably always will) nonstop fasiculations, SOME level of weakness in my left calf and, most worryingly, atrophy. My left calf is now significantly smaller than my right and has a huge dent when flexed where the muscle is simply missing. It is not my imagination and the atrophy continues to worsen, but it is NOT ALS.

Dr. Wu performed an EMG and despite it popping constantly, there were only fasiculations. I could not bring myself to believe her, as I was insane enough at this point that I thought I was actually an EMG expert from reading every post on these forums and studying YouTube EMGs. I repeat- I actually believed that I was more in tune with what the EMG was reporting than a neurologist with a P.hD. and top certifications from colleges like Baylor and electromyography programs. I believed there were fibrillations and PSWs and combined with the twitching, atrophy (which she confirmed but did not seem concerned with) and perceived weakness, I was morose.

Fast forward to now, July 25th. Almost one year from the beginning of this ordeal. I have thrown away one year of my life and more. I have gambled away tens of thousands of dollars and spent days sleeping without talking to anyone. I have told friends I was going to kill myself. I have been a coward and shame and downright offense to anyone who truly has ALS. I am still twitching, non stop, and my calf has atrophied significantly. How does this story end?

With my waiting 5 months to at least see Dr. Michael Elliot today, director of Swedish Neuroscience and one of the foremost experts on ALS on the west coast. I cannot say enough about Dr. Elliot- he was compassionate, empathetic and analytical about everything that had happened to me. He performed a thorough EMG, my FOURTH, and told me it was crystal clear. He also confirmed the twitching and the calf atrophy, and guess what- he assured me 99.99999% that it is not ALS, but the remnant of some S1 radiculopathy from when I tore my lumbar muscle years ago.

In short, he explained to me that ALS is a strange disease that manages to be both arcane and straightforward at the same time- for those of us uneducated in neurology, it's complexities far out weight our ability to diagnose it ourselves. For those that truly know this demon, they see it right when you walk in the door or after spending several minutes with you. It is NOT something you can pursue yourself and NOT something you are likely to have without clinical weakness.

With a clean EMG....

YOU DO NOT HAVE ALS. PERIOD.

This comes from someone who had weakness, atrophy AND non stop twitching! If you are only twitching- do not worry. See your PCP, go through the tests, and most importantly, TRUST them. These people know what they're doing- the horror stories online of missed diagnoses and nonchalant neurologists are NOT the norm, and if you're truly worried about that, schedule with someone top notch- the wait and money are worth ridding yourself of this stone. Don't lose what I did.

I do not want to post here again and I have shed enough tears on this road. The kind and intelligent members here like Laurie and Shiftkicker already told me everything I just repeated, months ago, trying to spare me of this agony while dealing with their own that is 100x worse due to true contact with this disease. I chose not to listen to them and continued to believe I was the only one who really knew what was going on. I truly hope that those of you who begin to twitch, begin to experience muscle problems, begin to research ALS... Understand that there is only so much you can know on your own. Ask the members here but do not abuse them as I did, and see the proper doctors.. and trust them.

I truly hope that my message can help those who find themselves in my shoes in the future. More than anything I hope that everyone here who has real contact with ALS finds enjoyment in their lives and remembers they are the same person they always were. You are all beautiful and I truly wish you the best.
 
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KarenNWendyn

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Gabe,

Thank you for sharing your story. I hope it helps others here.

I’m sorry you wasted a year of your life and even thought about killing yourself. I’m glad you didn’t. I hope you will rebound emotionally and go on to live a long fulfilling life.

It sounds as if you’re off to a good start.
 

affected

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Thank you for sharing this.

Sometimes we sound so harsh, but truly we don't like to see anyone waste precious time in such agony. We know how short life is. We know how important every moment, hour and day is.

I hope this helps some of the worriers here to let things go and live. Thanks again.
 

lgelb

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Gabe, thanks for circling back. I am truly sorry you left so much behind in China. Assuredly, you have gained perspective that will help you make the most of your future opportunities in life.

For those reading this who have likewise "doubled down" on the idea that you have ALS, and become obsessed with it at the expense of the rest of your life, the real part, that is so fleeting in the best of times, I hope that you heed Gabe's words and experience.

Best,
Laurie
 

Atsugi

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Should be a sticky!


Props to Thegabe.
 

Thegabe101

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I just hope that some of those who browse the old threads will stumble across this. I know because I was there, and I believed that no one who had the symptoms I had and came out of it without facing ALS. The neurologist I saw recently explained that coincidences do happen and it seems that I am facing CFS combined with some old, underlying nerve problems.

I was a bit manic and also very wrong and I would encourage anyone who is in a similar situation to take a deep breath and tell themselves they are more likely than not to come out OK. I do NOT think they should ignore or under report their symptoms- I'm glad I really pushed my doctors because I DID know something was wrong, and it was worth all of the appointments/money/fear in the end. In fact, I am coming out of all of this with a hugely increased appreciation for life; it's as if my senses have been turned up to 10 and every morning when I hear the birds chirping outside my window I take a deep breath and smile. I am also trying to be more empathetic to those (not only those with ALS, but other diseases as well) who deal with serious physical problems. The world is a complicated place.
 

ThisPresentMoment

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Agree with making it a sticky!

I'm glad that you persevered and got to the truth, Gabe.
 

Thegabe101

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Thanks are really not needed. I felt really guilty about my posts on this forum after realizing that I didn't have ALS. If the story itself or an excerpt of it can be helpful as/or added to a sticky, feel free.

My ALS story is over but the neuro stuff is not. Just realize if your a DIHALSer that "the neuro stuff" encompasses a far wider, more likely swath of diagnoses than does ALS.

Happy Summer everyone stay cool
 
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