First-time Poster (ALS fear)

[twp3991 0]

Hello,

First time poster here (27 - male, USA)  - It all started out a few weeks ago - I've had a slightly swollen lymph in my neck for a few years now, and recently started worrying about it, and got it checked out. It ended up being nothing, but during that time, I noticed my legs felt very weak. I hadn't been to the gym in probably a month due to my stress (also had to put a pet down in that time period, so I kind of wrote it off to that.) One night however, I looked up what weak legs could mean, and of course the first thing that popped up was ALS, and it sent me into a tailspin. I had to call out of work twice that week, just so I could stay home and not be near anyone. I was doing a little better, but then this past weekend, I freaked out, and my anxiety levels are back up to where they were before.

My symptoms are - Perceived weakness/stiffness in my right leg and slight pain/weakness coming from lower back. Every step I take, I'm thinking about drop foot/tripping now. Can ALS even start in the back? From everything I've read, most patients have their symptoms start in their fingers/feet. Do symptoms such as foot drop/finger strength die over night? Or do they stretch out over a period of time and progressively get weaker? 

I'm constantly doing strength tests to check my symptoms (I sprint up stairs 5 times a day at least, stair jumps, stand/walk on my heels, stand/walk on my toes). I was also able to run 2 miles yesterday, although my leg still felt weird doing so. I'm still able to do 25 push ups no problem too. In my mind, I keep thinking I can't do these things, but am always able to. 

Has anyone gone through this before? It's really taking a toll on my life as I'm struggling with work and I get home and don't want to do anything as I'm always in a panic. I realize how rare of a disease it is for someone my age, but it still hasn't reduced my fear.

Would love to hear from others with similar stories. 

Tom

[Worriedfornothing 8]

I can can help with this fear as I suffer and still suffer from it. It is probably the most common fear for health anxiety sufferers. I felt it would be best to respond to your question by breaking down each of your symptoms.

Weakness: 

You don’t have ALS weakness because you state that you feel weak. ALS weakness presents with complete and utter failure of a specific muscle. You wouldn’t feel weak, but a specific muscle would be paralyzed and unable to move at all. This is called clinical weakness. If you can run two miles then it is certain that you do not have clinical weakness. If you can run upstairs then this means that you don’t have foot drop either.

Sensory:

You also state that you feel pain. Sensory nerves are not affected in ALS. If you feel pain then it is not ALS.

I had similar issues as you. I had a nerve compression in my knee that caused foot weakness and I immediately catastrophised to the worst case scenario. I was particularly vulnerable at this juncture due to life stress and it gave  health anxiety the perfect opportunity to take hold.

Since my scare with my foot, the fear has not completely resolved. Health anxiety will migrate and try to cater itself to what you know about your fear. It jumped from my foot to my shoulder to my thumb. It is important to remind yourself that this is textbook health anxiety and nothing more. Anxiety can’t mimic true ALS but it can create vauge feelings that an anxious mind can mold.

[twp3991 0]

Thanks for the reply - This was awesome. 

I guess the thing still getting at me is that it feels the weakness to my legs might be coming from my back. I know I don't have clinical weakness yet in my hands or feet, but is it possible it's starting in my back? And eventually spread elsewhere? 

I can easily do simple things such as buttoning a shirt, opening a can of soda, cutting fingernails etc... but is ALS so simple that one morning you wake up and are not able to do that all of a sudden? Or does it slowly weaken until you are unable to? 

Sorry for the questions - That's where my hangup currently still is. 

[Worriedfornothing 8]

I unfortunately have researched this topic painstakingly during my struggle with an illness starting with A (anxiety). 

Weakness Onset:

ALS usually starts distally in either one hand or foot and then progressively weakens adjacent muscles. An onset in the back would be peculiar and I personally have not read an account stating that their symptoms started in their back (and my anxiety has caused me to waste hours upon hours researching this topic. I suggest you do not do the same).

ALS weakness also suddenly occurs from what I’ve seen. One morning you can button a shirt and the next morning you can’t. One day you can walk normally and the next day your foot is dragging. ALS patients do not feel it coming on so to speak. The suddenness and severity of the weakness is what causes them to see a doctor. There is no wondering “am I weak?” with clinical weakness. It is obvious and undeniable.

My advice to you is to take what you see on this site and run with it. Many of the members of this site have seen neurologists who have conveyed the same information to them about the disease that I am articulating to you. I am no doctor but have been very far down the wormhole on this disease. The more you read about ALS the harder it becomes to shake the fear because the real culprit, anxiety, alters form to vaguely mimic symptoms.

I wish I found this site early on in my spiral. This place has helped set me straight on the illness. Unfortunately, I poured through misleading google links and articles full of  half facts that filled my mind with confusion. I am still working to undo all the harm that did. Please do not look up anything else on ALS. If this doesn’t calm you down then go see your PCP and they will also set your mind at ease.

 

 

 

 

 

 

[AlwaysFreakingOut 11]

Yep agree I did same thing a long time ago.  Your symptoms don’t match at all.