Concerning Symtoms, Scared of ALS

Hello, before I begin, I have already read the thread titled “Why You Don’t Have ALS.”

I’m a 23 year old male from US.

Symptoms started about 2 months ago with a burning sensation in my left leg. Never noticed any significant strength loss or inability to walk on it so I didn’t think that much on it initially. Then I started getting random twitching all around my body. Some twitches I could actually see the part pulsating. I went on google which was probably my first mistake and I kept being led to MS & ALS type of nuerological disorders.

I went to my primary doctor where she did a few physical tests such as reflex test and all that and she basically labeled it as anxiety. I did feel a little better after that but the twitching around my body was still persistent & my left leg still felt weird when walking.

I managed to get an appointment with a neurologist who did a physical test on my, watches how I walked, did blood work & she told me that she thinks I’m fine. I did feel a lot better after that and the twitching did calm down a bit BUT, 3 days after my appointment, I started getting new weird symptoms.

BOTH of my hands felt like that were constant cramping. When I hold anything I get a weird feeling in my hands. I have never dropped anything or wasn’t able to do something like turn a key or open a bottle, but the feeling is making me extremely paranoid. I’ve read online with ALS that one of the initial symptoms is hand cramps. Although I’ve heard that it would usually be one hand and not both at the same time, it’s still making me extremely anxious. It’s been persistent for about a week now.

My neck also feels a bit tight when I turn by head to the left it hurts as if I pulled something in my sleep but again, it’s been about a week since this occurred as well.

Please tell me if I sound crazy or if all this could actually just be anxiety. I have been to my main doctor and a neurologist so this is not the first place I’m turning to for advice.

Thank you so much.

Hi Matt,

Respectfully, this being your first post here. I see you've read the thread here as well as on the ALS Forum (which I C&P'd from there). You've gotten professional medical advice as well and now you're on an anxiety forum seeking advice and reassurance. The reassurance is that not one person on this forum has been diagnosed and if you read through the threads you'll see many very similar if not the same as yours. The advice is really no different than what the professionals and actual sufferers told you. Get help for the real issue which is anxiety. Hope you feel better soon.

Positive thoughts

Thank you for the quick, response I do appreciate it! My main reason for posting on here is because the symptoms I’ve started noticing with my hands of course started AFTER I saw my neurologist. So that’s what made me overthink the whole thing again because I never got to mention that to her.

I keep getting told that it’s just my anxiety & that I’m probably just clenching my hands in my sleep and that’s why they hurt but for the last week and a half, my hands have had a funny feeling in them whenever I hold something or do anything. I’ve never dropped anything or not been able to do something with them but my hands actually hurt and just have this persistent feeling in them and it’s really scaring me. I’m really worried I’m devolving ALS or something like it.

People tense different parts of their body with anxiety. My areas include my jaw and @rse cheeks..

Also, the stress response is responsible for many (if not most) symptoms. I have muscle spasms when my anxiety is high and I've been known to lose my grip on a cup of coffee and empty it all over myself. I was convinced it was MS, but the brain scans and whatnot said otherwise..

Try and do a body scan to work out where you naturally hold tension, and it may well be the case that this is something you do in your sleep but not in the day - like people grind their teeth.

Also, stress hormones can make your hands 'buzz', feel very hot or very cold. They can cause a sensation of numbness, involuntary twitching, tremors, and all manner of 'scary' symptoms which will have your HA mind speeding towards neurological diseases like a heat seeking missile..

I feel like my hands are working normal but I just don’t like the feeling they have when I’m using them. I’ve talked to my doctor about it and she doesn’t think that it’s anything crazy to be concerned with.. but idk if I should just go back to my neurologist and discuss it with her.

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Emmz

I don’t understand how this could all be caused by anxiety. Everything just feels stiff. I know anxiety will make you feel “jerky” with your movement & shaky but I actually feel stiff

It started with my left leg 2 months ago, which still feels weird when I walk. Then it moved up to my hands, which felt like they were cramping and now feels like my knuckles are like popping when I make a fist.

Now my neck feels tight. When I turn my head to the left it feels like I pulled something and it hurts. Now the back of my neck feels all stiff, I can still move my head but it feels stiff and hurts when I do so.

I am concerned because this has all happened starting at the bottom of my body and moving all the way up to my neck.

I don’t know how this could be anxiety.

Does this sound anything like ALS?

Quote:

---

Originally Posted by venusbluejeans

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Emmz

---

READ THIS!

FMP

Oops, I apologize! I’ve been in such a daze I wasn’t even thinking!

Also, I’ve read that so many times, I just don’t like how it’s literally my whole body that feels stiff.. my legs, my hands, my neck.. how does that now resemble something like ALS?

Quote:

---

Originally Posted by MattAnon95

how does that now resemble something like ALS?

---

Exactly! Based on the stickie (which is from the ALS forum that kicked you off), you tell me :whistles: Might be time to address the real issue which is mental. Anxiety can and does cause real physical symptoms and your post affirms it.

FMP

Oh I have addressed it! I’m seeing an internist every week & I was put on 2 different medications. It’s been about 2 months already. The hand symptoms and neck just started within the last 2 weeks tho which is confusing me. How could anxiety cause my neck and hands to feel stiff?

Quote:

---

Originally Posted by MattAnon95

How could anxiety cause my neck and hands to feel stiff?

---

READ THIS

FMP

That definitly makes a lot of sense. My only concern is that I was doing really good with my anxiety for a couple weeks once the medication kicked in & then that’s when my hands started out of no where and now my neck.. if I wasn’t as stressed/anxious.. how could anxiety have caused it?

Anxiety is like a campfire. There are always hot coals smoldering in the fire pit. All it needs is a little bit of wood and the fire starts burning again.

FMP

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Emmz

I just can’t seem to get out of the ALS hole I’ve dug myself into. It’s completely taken over my thought process with everything I do.

Quote:

---

Originally Posted by MattAnon95

I just can’t seem to get out of the ALS hole I’ve dug myself into. It’s completely taken over my thought process with everything I do.

---

You're asking for HELP.

FMP

I just wish I could get myself out of this mindset that everything I feel is ALS related. I’ve read the post thousands of times now that explains why we don’t have ALS bur I just can’t get it out of my head. I’ve seen conflicted answered relating to symptoms… is it not true that neck tightness and hand stiffness are early symptoms? They’re both fully functional but won’t it gradually happen?

Quote:

---

Originally Posted by MattAnon95

is it not true that neck tightness and hand stiffness are early symptoms? They’re both fully functional but won’t it gradually happen?

---

Clinical Weakness—ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work


FMP

I keep telling myself that, I’ve just heard that sometimes a tight neck or a tight body part could be the start of ALS but some people don’t realize

Quote:

---

Originally Posted by MattAnon95

I keep telling myself that, I’ve just heard that sometimes a tight neck or a tight body part could be the start of ALS but some people don’t realize

---

Ok... Can't say I didn't try :shrug: Hope you feel better soon.

FMP

No you definitly tried and definitly have helped me, I’m not like unable to function because of anxiety it’s just always on my mind and I wish I had answered because stuff online is always misleading when it comes to symtoms.

Hello, I have an update since my last post about 2 weeks ago.

I got my neurologist to agree to performing an EMG on my left leg since that was the initial body part I started feeling symptoms. She told me that everything was normal. She did tell me that one nerve near my calf was responding slower then normal but it was nothing to be concerned about. When I asked why she thought I didnt have ALS she told me that she doesnt think I dont have ALS, she KNOWS I dont have ALS. It made me feel a lot better and I've been trying to keep it off my mind, its been about 4 days now since my appointment. I just can't seem to shake the feeling that I have with my tongue. It almost feels like my tongue is too big for my mouth and when I talk it feels like my tongue gets in the way of talking smoothly and feels like I'm slurring my words. Everyone tells me that I sound normal, doctors included but I can't stop feeling it. Is that common with anxiety with the tongue? I believe the neurologist and I know she wouldnt lie to me but I'm just really confused. Thank you!

Congrats! But we all knew it :winks:

FMP

Deep down I knew it as well, but this new symptom I feel with my tongue is making it very hard for me to remain sane. Is that common with HA? Feeling like your tongue is like bigger than your mouth and when you talk you feel like your tongue is getting n the way of your words almost? Everyone including two doctors have told me that I don't sound like I'm slurring at all but in my head it feels like it.

I think that you're probably hypersensitive to it at the moment.

Listen to your doctor if they think it's nothing to worry about, it's nothing to worry about.

I feel like I’m slurring my words to. I genuinely think I am, and that it might be bulbar onset als. But I am also aware I have thought this several times over the past 5 years. So I know for a FACT anxiety can create this impression

I’ve been to the neurologist twice & my normal doctor at least 6 times in the last couple of months due to just getting out on anxiety medication and her adjusting my dosages every couple of weeks. It’s very frustrating being told that you are fine even though you physically feel symptoms. I believe the doctors even though my body is telling me not too. Just wish this new thing with my tongue would stop. I’m so nervous to speak because it literally feels like I’m going to slur all of my words. My tongue just feels like it is in the way, I don’t really know how to explain it. The tip and sides kind of hurt too but I think I may be biting down on my tongue subconsciously since it feels like my tongue is too big for my mouth. It’s very confusing and impossible to explain. It’s extremely nerve-wracking.

Hello, it’s been a couple of weeks since my last post and I just have a few concerns and updates on my problem I’ve been having.

I still keep getting this weird feeling with my tongue. I feel like at times I can’t talk properly and it almost feels as if I have a lisp. My tongue hurts and feels as if it was burnt. I have these small red bumps on the top of the tongue where it hurts, almost like a razor burn look. My girlfriend says she can feel it but says I sound normal. I’m losing my mind, I have been doing really well the last couple of weeks with my anxiety over having ALS or an MND but this new issue has began to put me over the edge again.

You are doing what I do. Veering between spinal onset ALS and bulbar. It’s absurd, when looked at from the outside!!

It’s very hard to break out of. It’s bad because I can physical feel pain on the tip of my tongue and actually see little red bumps as if I somehow burnt or hit my tongue or something. And when I talk sometimes I have to repeat myself or talk slower otherwise it sounds like I have a lysp with certain words. I’m not sure if that’s just because of the pain when my tongue hits my teeth.