Is this Health Anxiety or ALS?

[Brandon713]

I just want to start off by saying I really appreciate this forum. It’s very informative and definitely an eye opener for myself. I’m a 37 year old married man with 2 boys. Before I start off with naming my symptoms just to inform you guys that I was diagnosed with Chiari Malformation in 2010.

Fast forward to May 2023. One night I had a nightmare that I was in the hospital and someone told me you have ALS. I woke up panicking. At that time I didn’t know what ALS was. Instead of going back to sleep, i immediately google ALS and went straight in a rabbit hole. A few days later, I notice one morning that my left arm felt really heavy and weak. I didn’t pay it any mind because sometimes I like sleeping on my arm at night.

A week went by and notice that my arm was still feeling the same. I went back to google and and saw ALS. I was sick to my stomach. I was still able to do my daily task, lift heavy objects, type on the computer, ect. Mentally I was a reck. I couldn’t focus at work or anything with my family. I was always googling and on YouTubing stories and symptoms. Certain videos stuck with me and I was loosing my mind because it seemed identical in what I was going through. Eventually both arms start feeling weak but I was still able to do things. The weakness goes and come.

A few weeks ago, both of my legs started feeling weak. One Saturday my right calve got extremely tight. I could barley walk. The tightness went to my shins. I went to the ER numerous of times for this manner. All blood work came back normal and they said there was nothing they can do and to make any appointment with a Neurologist. Eventually I started feeling the same tightness in my left leg. The tightness goes and comes. I also have back issues for a few years. My back hasn’t hurt for a while. Hear are my MRI from my back;

L4-L5 disc desiccation annular tear mild to moderate central, stenosis attributed to disc protrusion.

L5-S1: Disc desiccation. Annular tear with associated central discprotrusion with mass effect upon ventral thecal sac. Bilateral facet hypertrophy with resultant bilateral foraminal stenosis

Impression:
1. MILD TO MODERATE SPINAL STENOSIS L4-L5
2. ANNULAR TEAR L4-5 AND L5-S1
3. CENTRAL DISC PROTRUSION L5-S1 WITH MASS EFFECT UPON VENTRAL THECALSAC
4. BILATERAL FORAMINAL STENOSIS L4-5 AND L5-S1

I made an appointment with my neurosurgeon that I was seeing for my Chiari. He did 3 different MRIs: my brain w/o contrast, cervical spine w/o contrast, and thoracic spine w/o contrast. I explained to him my symptoms and all the googling I was doing. He said that I need to stop googling and recommend that I see psychiatrist to help out. Ive been in tune with my health, especially in the last 2 years. No doctor has diagnosed me with Health Anxiety but I think I have it. He confirmed that he seen no signs of ALS in lab work or MRI. He referred me to a Neurologist because he saw that I was still concerned. It’s so hard to get an appointment. I’m still waiting for them to get back with me.

Im sorry that it’s a long post. Im just worried.

 

[lgelb]

In fairness, we would not expect to see ALS in typical MRIs or labs. But at the same time, your neurosurgeon not only has some understanding of ALS but of your starting point in terms of mobility and strength. So honestly, if he's not concerned, I'm not, but on top of that, you don't describe ALS.

If you think you have health anxiety, based on what you've said, you probably do. Replaying videos in your mind and all that is certainly indicative of that. So yes, I would seek help with a counselor who deals with it -- there are tips and tricks that help, and getting to the bottom of things is certainly better than letting anxiety hijack your life with your family.

You can certainly ask your surgeon, as well, if he thinks physical therapy might play a role in helping to keep your spine damage from affecting your daily function (it's possible that it's playing a role in this on/off weakness and weird feelings), and continuing to avoid pain. And obviously he is following the Chiari.

Part of the "prescription" that I'd also recommend is, of course, staying away from all things ALS, on and off line. Block the term in all your social nets and in your browser. You don't have it, but it can still ruin your health and happiness.

Best,
Laurie

 

[Brandon713]

Since my last post, I’ve been having internal vibrations in my right thigh and it moved all the to the bottom of my right foot. Im also having twitching in the arch of that same foot. My right bottom leg and foot feels extremely weak. Im still about to walk on my heels and tip toes. Both knees feel tight.

 

[Nikki J]

Vibrations are commonly reported by the worried here but not by PALS

 

[Brandon713]

Ok. I’m just overly concerned about the weakness that just started a few days ago around my bottom right leg and foot. I have an appointment with the neurologist on 9/5. I’m really nervous about it.

 

[Nikki J]

That is just days away. Prepare for your appointment ( use the getting a diagnosis sticky at the top of this subforum for a guide) then get off the internet and do something fun for the weekend

 

[Brandon713]

Giving feedback from my appointment that was on September 5. The doctor was very pleasant and informative. She listened very well to my concerns and questions that I had. She did a physical exam and said I didn’t have any clinical weakness and is not worried about als at all but want to do an EMG just to be on the safe side. Since the appointment, the weakness feeling on my left arm has gotten worse and I’m starting to feel the same symptom on my right arm. The feeling in my arms comes and goes. Sometimes I get tingling and burning sensation on all my extremities, especially when I wake up.

 

[KimT]

Don't worry about ALS. There are many, many reasons for EMGs. They can rule out ALS and other issues. They can also reveal issues that aren't ALS.

Best of luck.

 

[Clearwater AL]

Brandon, The Neuro apparently told you…

“…is not worried about ALS at all but wants to do an EMG
just to be on the safe side.” Key words... "at all."

Safe side...

For her and the facility… why not? They get paid very
well for an EMG based on a profit margin. In the medical
complex today there are nearly zero office visits, procedures
or tests that are a loss or break even. As long as you or your
insurance will pay for it… again, why not?

(Today hospitals are employing strong arm debt collection
companies and tactics to collect a mere $50, $100, $200 dollars
from unfortunate people, those who may not have insurance,
unemployed or crippling sick by the millions causing the sad cycle
of worse credit ratings which in turn finding a job, credit based which
many jobs are now. Over a $100 bucks?)

( For others of similar cases too. )

The feeling in your arms comes and goes. Sometimes you get
tingling and burning sensation of all your extremities.
Anything that comes and goes points away from ALS.
Tingling and burning also points away from ALS.

Just a note... going back to your first post second paragraph...
One night you had a nightmare that you were in the hospital and
someone told you - you have ALS. Next day, thanks to Dr. Google
here you are on an ALS forum.

I hope your next EMG will finally set you free… at least of the
burden of living with anxiety concerning ALS.

Hope any other issues get resolved soon so you can go on
with a life enjoying/raising your two boys.

 

[Brandon713]

Hello everybody. I had an EMG done yesterday on my right limbs and everything was normal. I had a clean EMG. The team of doctors said there wasn’t any need to do my left extremities. My arms and legs started feeling better. I want to thank everyone for their input and support.

 

[Nikki J]

Thanks for letting us know. Have a long and happy life

 

[Brandon713]

Hello again. Since my appointment with the EMG, which was September 19, I was feeling a lil better then it took a turn for the worse. My upper arms and shoulder blades get fatigue very easily when I’m picking up things. My elbows get tight at time. My fingers get swollen and tight. I feel twitching in different parts of my body (arms, legs, right pinky toe, left middle finger). The twitches don’t last long. It goes from one spot to the next. My tongue have some weird sensations going on. It’s kind of hard to describe. It feels burnt, raw, swollen, tingling, and twitching. My speech hasn’t changed, just a lil studder here and there. My legs still goes from tight and achy feeling to weak feeling or sometimes they feel normal. I get tight knees too. These feelings come and go except for my tongue. The tongue feelings is ongoing.

 

[lgelb]

I would seek PT, as I noted above, for the Chiari and spine damage. Your PCP or neuro can order an evaluation. We have established that you don't have ALS, though, so fortunately, you're in the wrong place.

If PT doesn't help, or the PT doesn't think it's indicated, that would be the time to go back to your PCP and discuss the possibility of systemic illness such as a post-viral syndrome, even if you never tested positive for COVID.

 

[Brandon713]

I booked an appointment with my PCP and it’s on Monday to go over my EMG appointment and to go discuss my other symptoms.

 

[Clearwater AL]

Brandon, I've been following you and your searches, you've been on here almost
everyday looking at old threads going back to 2014, 2018 and other past threads...
numerous.

It's been established here you don't have ALS.

Now, without doubt you are dealing with serious Health Anxiety. I hope your
up and coming appointment will finally help you let go of ALS and
address your symptoms which most are probably Health Anxiety related.

Post the Summary/Conclusion of your September 19 EMG when you have
it or if you have it now.