Inside: Are you worried you might have the early signs of ALS? Read on to find out how I discovered I have a rare neurological disease that’s paralyzing my arms.
On June 26th, 2017, I found out that I have early signs of ALS.
I used to joke with people and say, “I’ll be paralyzed by 30.“ Little did I know, it wasn’t a joke.
What are the early signs of ALS?
- Muscle Twitching
- In some forms of ALS, slurred speech is common
- Brisk reflexes
- Muscle spasms
- Weight loss
How I found out I have the early signs of ALS?
It started about 1.5 years ago when I began noticing that my right hand wouldn’t work correctly. Typing became increasingly difficult and lifting a 10lb weight was nearly impossible.
I let it go for a little while before seeing an orthopedic surgeon. He took one look at my hand and said that I needed to have surgery immediately – He cited severe atrophy.
He incorrectly diagnosed me with carpal tunnel syndrome and ulnar nerve entrapment, causing me to have surgery that wasn’t actually needed. (This is when I learned you should always question your doctor…)
- 3 months went by after the surgery, and I’m asking strangers in the restroom for help buttoning my pants.
- 4 months went by after the surgery, and I have to sit down to apply makeup because it’s too difficult to lift my arm.
- 5 months after and I can no longer run without my arm falling completely to the side as a “dead arm.”
- 6 months went by and I’m on a date when I realize that I can’t move my left thumb.
I went to work that next morning and innocently Googled, “losing motor skills in my hands.” This is when I had my first mental breakdown. Never did I think I had anything serious. Things like this don’t happen to people like me. I have a successful career, a loving family and supportive friends. I’m only 26.
BAD THINGS DON’T HAPPEN TO 26-YEAR-OLDS.
At this point, it started making sense – spontaneously losing muscle, no pain, weird spasms. I have the early signs of ALS.
The Neurologist Appointment
I scheduled an appointment with the previous surgeon for the next week. He listened for all of five minutes before telling me that I need to see a neurologist. His nurse enters the room and asks if I “understand the severity of the situation.”
Between muffled cries, I reply “yes.” I’m now on my second mental breakdown.
Upon receiving the name of my Vanderbilt neurologist, I decided to Google him. He’s the head of the ALS clinic at Vanderbilt. And now I’m having my third mental breakdown in my car outside of work.
On my first visit, the doctor goes through all of my symptoms. He cites in my medical report that I’m “anxious” and that the “patient thinks she has the early signs of ALS.” He tells me that at my age, it would be highly unlikely that I have ALS.
The median age group for ALS patients is between 40-70, and it’s a 2:1 ratio for men. I have better odds of winning the lottery than developing an extremely rare neurological disease at 26. He calms my nerves for a bit and orders an MRI of my spine.
Eliminating All Other Possible Diseases
There is no test to diagnose ALS. Basically, once muscles have degenerated in three parts of your body and everything else has been eliminated, then you’re diagnosed with ALS. Obviously, this means it can be a long and drawn-out process.
Up until this point, all of my blood work has come back normal and my brain MRI has come back normal. I secretly pray that I have a benign tumor on my spine so that I don’t have to hear another negative report.
Two weeks later, the nurse calls to tell me that the MRI of my spine came back normal. This rules out any chance of a pinched nerve. The possibilities are getting smaller and smaller…
An Abnormal EMG
I go back in on June 26th, a little nervous, but altogether trusting that there is no way I could have ALS. I’m just too young. (Right?)
The doctor says that he is going to do an EMG on both of my arms and possibly my leg.
Thirty excruciating minutes go by and he asks me in the middle of the test, “and you’ve experienced no problems with chewing or swallowing?”
This is not what I want to hear. He then asks me to roll over, because he needs to test my back and then my neck. At this point, I’m not sure if the tears were from the pain or knowing that the results were not looking good.
I know I have the early signs of ALS.
Afterward, he comes back into the room and tells me that my results were abnormal. I’m losing muscle in both arms up to my shoulders, but my leg, back and neck are spared.
There is still one disease left on the table that does not have a death sentence – benign focal amyotrophy.
And this is where I’m at today, June 26th, 2017.
Are you searching for a diagnosis? Comment below and share your story with others.
For a quick update, it’s now 2021 and my arms are completely paralyzed. The weakness hasn’t spread outside my arms. I have a son, a husband, and a house!
For regular updates, follow me on Instagram.
Here are some resources for patients or caregivers of patients with ALS:
- If you’re a young woman and found this post because you have the early signs of ALS, then checkout Her ALS Story. This website spreads awareness for women diagnosed with ALS under the age of 35.
- If you have been diagnosed with ALS, then check out Clara Health. They have a centralized database with clinical trials and will set you up with a patient advocate free of charge.
- If you’re looking for nonprofits to get involved with, then please check out I am ALS, The Live Like Lou Foundation, and Project ALS. These are the ones that I have personal experience working with.
- If you need adaptive clothing options, then check out Juniper Unlimited.
- If you need a way to digitally manage your health records, then sign up for Picnic Health. This is free of charge to ALS patients who agree to share their data for research with the company.
For further reading, check out How To Advocate For Yourself At The Doctor (& Get Answers You Need) where I give real-life tips for what I’ve used inside the doctor’s office.
If you’re struggling to find peace with your health symptoms or chronic illness, visit How to Be Mindful When You’re Suffering from Chronic Illness (In 2021)
If you have additional suggestions or resources for ALS patients, then please put them in the comments below!
Allie Schmidt is a rare disease advocate and disabled mom living with motor neuron disease. She founded Disability Dame in 2020 to provide tips to other moms living with disabilities and chronic illnesses.
In her spare time, you can find her traveling with her husband (she's been to 38 states and 16 countries!), watching reruns of Survivor, or tending to her near-constant sunburn from spending too much time outside. You can follow her adventures here.
3 thoughts on “What Happens When You Have The Early Signs of ALS”
I am fairly positive that I’ve had a subdermal ischemic stroke and either the doctors aren’t looking for it or else don’t want to bother themselves with me and I really don’t know what to do at this point…I have an appointment with a neurologist on the 22nd of this month at UCD, so , what should I say? I have been really worried for some time now.
I am sorry for your plight with ALS but admire how you are addressing it.
I am concerned that the documentation of ALS cures among rare ALS “reversals” by the Duke University School of Medicine (at ALSReversals.com) is an unfortunate secret. Although ALS cures are unusual and based on non-conventional therapies, it’s harmful for ALS organizations to continue to falsely claim that ALS is an “always fatal” neurodegenerative disorder. Doesn’t this misdirection unfairly discourage initial trials of free breakthrough therapy at Beat-ALS.org based on the research of the Duke lab?
Sincerely, Steve Spiegel
I agree that ALS is not 100% fatal. I understand why they’d want to sell it this way, as it probably helps people who aren’t familiar with ALS be more compassionate (and give more money). It’s true that the people who survived it are outliers, but I also think that talking about someone else’s health in that way can be harmful. ALS is vastly different for everybody. Doctors have no idea the likelihood of you dying within a certain amount of time from ALS. They’re just using their best estimate against the average.
At the same time, it’s EXTREMELY HARMFUL to place blame on an ALS patient by acting like they can “just think their way out of this.” If that were the case, I’d be able to hold my son in my arms tomorrow. I’m hesitant to leave your comment up because I don’t want people thinking that I condone miracle cures… or condone benefitting from other’s challenges. You’ve definitely gathered some interesting data, but I don’t entirely understand what you’re trying to do with your website. I think “promoting the free cure for amyotrophic lateral sclerosis (ALS)… Now!” is a horrible way of benefiting from the devastating effects of this disease.