I’ve been reading a lot of health anxiety stories on here especially about ALS and I felt like maybe mine could be helpful to someone so I thought I’d share.
This is a long story so to sum up if you don’t feel like reading:
-perceived weakness forearms, wrists, hands, ankles
-tongue twitching, perceived slurring
-maybe some coordination issues
-possible thenar and calf atrophy (disproven)
None of these happened at the same time, kind of episodic. Saw 3 doctors. None thought als. Had emg and NCS. This is over a period of about two months.
Spoiler alert: I do not have ALS. I have anxiety.
I’m a 33 year old happily married mom of one, and I did not have a history of Health Anxiety before this event unfolded. I’ve always been type A, a worrier, and probably have always had some degree of General Anxiety Disorder. However, it never really affected my life in a negative way - well maybe it affected others in a negative way lol. Probably the worst case example would be my fear of others driving, which could be explained by past car accidents in which I’ve been a passenger.
On Halloween day (2018) I had a fibroadenoma removed. We knew it was benign, but it hurt and I wanted it gone. It’s a simple surgery, but you have to go under. No problem, I’ve never reacted to anesthesia before and as a mom I’m looking forward to a solid nap. When I woke up, I felt this strange heavy sensation all over. Not alarmingly heavy, just a new sensation I’ve never experienced. It was like I was wearing lead around my legs. I freaked for a second but I walked out of there, so I thought “how bad could it be?”.
As the days go on I notice my legs are still experiencing the same heavy sensation (to a lesser more manageable degree) especially when I run or get out of a hot bath or shower.
Five days post op - I start to google.
Go on, enter “heavy legs” into google. There’s some benign things and then there’s MS, guillan barre (which I knew it wasn’t), and some other more serious, attention grabbing things like myasthenia gravis. I don’t freak out though, my follow up with my surgeon is the next day so I just resolve to bring it up then.
The next day I bring it up with the surgeon and she just kind of shrugs her shoulders and is like you’re fine. She didn’t examine me or ask me any other questions.
Okay cool lady, but still not cured.
I wait a few more days to see what happens and maybe it’s subsiding, maybe it’s not, but I decide (based on hours of relentless google research) that I need to see a neurologist so I could either let it go, or do something about it. I don’t have a GP at the time so I go see an urgent care doctor to start the process.
She’s not very helpful. She can refer me to a gp who can refer me to a neurologist.
Okay, fine. I ask her “do you think this could be MS?” I expect her to tell me how rare MS is and that it probably isn’t the case.
She says that MS, for some reason, is more common in this area and that maybe it could be - but that “MS is weird, and ALS is weird.”
I swear I feel my eyes getting wider like I’m in 1950’s cartoon. My heart beats faster and I start to sound hoarse. “What?” I ask. She just shrugs.
Did she just suggest ALS? Suddenly I forget my MS concerns completely.
I know about ALS. I know about the destruction and the eventuality. But I don’t know about onset exactly, or what presentation looks like in the beginning.
Of course I leave the office in tears. I have a son, she mentioned a terminal disease. Why would she say that? I’m not weak? Am I? Did she think I was? Maybe I am weak and that’s what this is.
I go to the GP that day, the PA sees me immediately. I love them. She does reflex tests, looks me over. She says confidently this is neither MS or ALS. Probably a reaction to anesthesia but nothing neurological. But it’s too late for her reassurance. I’m internally panicking. It’s like nothing she is says is really going to matter.
A few days pass and my heavy legs symptoms and the perceived coordination issues have mostly subsided. But I’m down the rabbit hole. I’ve been on als forums, als sites, googling peoples first symptoms and digging up their stories. I’m not tripping, dropping things, I can do cartwheels and pushups and run 5 miles. The worst part about this specific anxiety is all the testing. I find sites that tell me to walk down stairs on my toes backwards and all kinds of other strength tests. I do this over and over and over. I run, I jump, I climb. Over and over. Stand on one leg and do it again. Seeing if I fail at anything even once.
My close and very fit friend comes over and I make her compare how many push-ups she can do to how many I can do. She sees I’m at the end of my rope and she obliges me even though she’s in her “I have a respectable banking job” clothes. We do about equal reps.
None of this has any effect on how I feel. I still feel like something HAS to be wrong. At this point I can’t even narrow down the symptoms, some part of me is weaker than the rest but it jumps around.
I try and tell myself I cannot possibly have this extremely rare disease - I’m too young, too active. Then I find the stories of young, active athletes. Their symptoms were so subtle. They were blindsided. I read and read and read. This has never happened to me before and I don’t realize I’m out of control. It’s like every piece of information I find will finally be the evidence I need that I’m fine. But I just can’t find it.
Suddenly, I develop muscle twitching. It’s like the Fourth of July inside my calves after something as simple as walking up the stairs. My arms twitch after holding my baby. The muscles around my knees explode after squats. This is all really unsettling. I’m trying to keep control of my mind because I feel like this is taking over my life.
Later, I realize I can do more calf raises on my left than my right, I imagine my words start to slur, are my ankles weak? I notice dents in my thenar muscle on my left hand. Is that atrophy? I’m studying my body and testing it relentlessly. It’s fatigued in its entirety. My arms are burning all the time, my calves hate me. And then, came the depression.
I’ve never been depressed before, I know that now. I think I always thought depression would mean I was sad, and something that with determination, I could just shake out of. But it’s not. I was consumed. I would cry all the time when I was alone, yeah. But worse, I wasn’t being a present mother, wife or human. I’m already like the worlds okayest mom and stuff, but I was quiet and kind of on my phone a lot looking up more ALS Information. The feeling was just that it was so hard to want to do anything, to get off the couch, to train for the half marathon I’ll probably not be running now because I just can’t even get up to do anything. I would watch my son play with his books and just couldn’t make myself get up to read them to him.
I have to do something about this I decide. My GP wouldn’t refer me to a neurologist (because she felt like I wasn’t sick!) so I decide to see if I can find one that doesn’t require a referral. Guys, this is rare. But I found one in Austin. She doesn’t accept insurance which is how she probably keeps her schedule more available, but even with that it would still be a little over a week before I could see her. She’s popular and for good reason.
Okay, no problem. I can be patient. But I’m lying to myself. I cannot be patient. I make the appointment but I also google for neurologists online that I could speak to, right now, this instant. I found a pretty cool page called “just answer”- this is not a plug for their site, but I want you to know the resource in case you ever get in the same position as me. I talk to a doctor almost immediately. I pay the extra fee for him to break it down for me. He is amazing. He never makes me feel like I have health anxiety, though he tells me that I do have anxiety. He explains to me about ALS, in great detail, and why I do not have ALS. I wish this guy could be my doctor for everything. He is so kind. I tell him my symptoms again and again and he maintains - this is anxiety.
Because of his help I start to mildly relax. My twitching reduces, I have more strength than I realized and I don’t seem to have any issues completing tasks. It’s going to be okay.
I’m not going to lie to you, I ask this guy several more questions highlighting other perceived ALS symptoms I may or may not actually have (I can’t even tell what’s real and what I’m projecting on myself at this point) and he has to reassure me several times. I spend a lot of money doing this but I don’t really care. He knows me by name at this point.
A week passes and my in-person neurology appointment is coming up. The fatigue hasn’t really gone away. And I still worry that maybe something is going on that hasn’t been detected. So I go to the appointment. Guys, this is also expensive to do but worth it. So worth it. She’s epic.
Her diplomas are on the wall, and one says something from the Mayo Clinic. Homegal has seen ALS a lot -I’m sure of it because you don’t train or work at the Mayo and not see it as a clinician. She’s sweet and doesn’t make me feel stupid. She listens to me for an hour. I cry a few times too.
During the exam she checks my reflexes and examines me with a sort of patience I’ll never possess using a flashlight for fasciculations. I pass all the reflex tests and she explains to me what MS and ALS are actually like. Like we all know - failure. Progressive failure. It feels good in person to see this gal, to have her test me and not find anything, and then she offers to schedule an EMG at our ALS clinic just to chill me out. I take the offer, even though she thinks I don’t really need it and the soonest I could get in is January. I see her at thanksgiving so it’s a while away. But her insistence that this is not ALS soothes me. Temporarily.
I know that sounds crazy. It is crazy. I’ve had a GP, online neuro and this very experienced and attentive neuro tell me I’m fine. Like not even a 1% suspicion. Why can’t I let this go. Because anxiety is a mental health issue. That’s really the bottom line.
December passes really slow for me. I’m in the anxiety groups posting about little things I feel, asking about bulbar onset, trying to get more and more information to rule things out. I talk to the online neurologist again. He’s sweet and patient still. You do not have ALS, he says. Again and again in different ways.
By the end of December I’m actually starting to feel better INSIDE. I’m running again, the twitching has stopped and any weakness I seem to have had has gone away. I consider canceling the emg but I don’t. Because I’m me.
January 7th came and I go to the Neuromuscular clinic. This guy sees ALL the ALS patients in the central texas area. That’s millions of people. I later ask his assistant how many ALS patients they see. Maybe 100 a year. Maybe a few more or less than that. That’s literally out of MILLIONS of people. Texas is the largest state and central Texas is one of the largest regions. I think there are 28 million people in Texas alone and central Texas is more than a fourth of that. West Texas is small. A very very large region with a sparse population so ignore that on a map and most of the population is Dallas, Austin, Houston, San Antonio. I read a study once that put the ALS population in Texas around 1800 people give or take. That makes me feel better, selfishly.
Before they start the NCS the doctor does another examination of me and asks me to go through my symptoms. I’m wasting this guys time and I know it now. But I tell him about the weakness and heaviness and the twitching but that it’s all kind of episodic now. He also doesn’t look at me like I’m stupid or crazy. Which is nice since I feel both of those things. But he does already know I do not have als. I can tell this because he has watched me untie my running shoes while standing on one foot to remove them and he nods and says “good, that’s very good”. He looks at the asymmetries I point out in my hands and calf and doesn’t even blink. Totally normal.
His assistant, who is also a physician and is a very pleasant human in general does the NCS. The NCS isn’t exactly painful. It’s weird. My muscles jump around under his shock tool and there’s some hmming and ahhh’s happening. But at the end of the test, which I will remind you was uncomfortable but not painful, he’s very pleased with the response from my nerves and it relaxes me.
The emg was actually less unsettling. There no shocking but I don’t really have an aversion to needles like some do. I mean I get Botox every three months people! Also, I had Kylie lips before she could drive a car ok? Lol.
It was all totally normal. Come back if I experience any more weakness he says. And heads out the door. This guy is sure nothing is wrong with me. And this is the guy who sees people with stuff very wrong with them.
Do I feel better? Maybe. Not really. Kind of. Sort of. Sure. I think we all feel like it could have missed something. I think we all feel like we know our bodies better than anyone. That’s anxiety. All this stemmed from what was probably a reaction to anesthesia, remember? Because I had a hard time remembering that.
But I am learning to accept that this was just a hard few months of anxiety and many others in that clinic do not leave with that kind of result. They leave with a diagnosis. Maybe the worst kind of diagnosis.
I hope me sharing this helps and at the least makes you feel not alone. Health anxiety is awful. I’m such a giving, loving person and I feel like during the time I was experiencing this I was selfish and tuned out. It changes you. The next step I’m going to take is to work on techniques to control my anxiety and realize when it’s getting out of control. I’m not making any resolutions about it. I’m just taking it one day at a time, which is all what anyone really can do. Xoxo.