ALS Concerns...Hear me out on this one.

[enidoreilley 83]

23 hours ago, Concerned-pa said:

So I went out today and cleaned up in the yard and my right quad felt so tired (my whole body did to an extent) and this was after very low level work for me (picking up sticks and walking 70yds to our woods and back up again a few times). I'm relatively in shape, 34 years old, so this wasn't normal. It wasn't as if my leg was failing, but definitely fatigued and tired. Then after coming in I feel like I'm just exhausted and my leg just feels tired. Is ALS always a sudden attack or can it be gradual?

ALS is never described as anything approaching an "attack", but by the same token, it is never described in any of the ways you are describing your symptoms. I did exactly what you did with ALS - I went online and found all of these personal stories. With all of the resources we have at our fingertips on the internet, you will ALWAYS find justification for your fears. In no way does this make them valid. See your GP in the office and be honest about your fears and let them talk to you. Don't go on Google. You are doing yourself no favors.

One more thought - and this comes from my very regrettable, ghoulish, depth-of-the rabbit hole time spent on ALS support forums for sufferers and their caretakers. The overwhelming consensus from people who actually have the disease is "What the fuck are you doing spending your healthy days fretting about a disease you don't have?" Even if you have ALS (you don't), your obsession over perceived symptoms and color-by-number approach to Google diagnosing yourself is serving you ZERO. Go live. Get fresh air. See a funny movie. Hang out with friends. 

[DoxieMoxie 316]

On 3/15/2019 at 4:44 AM, Concerned-pa said:

So it's safe to say if there is burning and/or tingling (agravated by position and lifting objects), it's not an early sign of ALS?

Yes, because these are sensory symptoms which cannot be caused by a motor neuron disease like ALS.   

[DoxieMoxie 316]

On 3/16/2019 at 10:11 AM, anxietyprince said:

Burning is not a symptom. No sensory feelings is a symptom. Especially if it’s only happening periodically. Mine is all the time

I'm going to be pedantic here, but will point out that no sensory symptoms are caused by ALS, whether they happen periodically or all the time.

[anxietyprince 4]

4 minutes ago, DoxieMoxie said:

Yes, because these are sensory symptoms which cannot be caused by a motor neuron disease like ALS.   

So you’re positive that ALS wouldn’t cause a tingling/shock/tickle like sensation? I just figured if it was a pinched nerve that it would go away or come back doing certain things. But it doesn’t & does not hurt maybe rarely it does. If there was pain I would not be concerned at all. The sensations mainly occur when I grip things hard or relax my hand completely, the same sensations have gone to my ankles and calves just recently. If it can’t be ALS then I wouldn’t even be concerned 

[DoxieMoxie 316]

3 minutes ago, anxietyprince said:

So you’re positive that ALS wouldn’t cause a tingling/shock/tickle like sensation? I just figured if it was a pinched nerve that it would go away or come back doing certain things. But it doesn’t & does not hurt maybe rarely it does. If there was pain I would not be concerned at all. The sensations mainly occur when I grip things hard or relax my hand completely, the same sensations have gone to my ankles and calves just recently. If it can’t be ALS then I wouldn’t even be concerned 

I really cannot say it more emphatically; ALS does not cause sensory symptoms.  It is a motor neuron disease.  The presence of your type of symptoms points away from ALS. 

Let me put it this way.  If you came to the doctor with actual weakness in your hand (which I'm not even saying you have, this is just a hypothetical), one of the things the doctor will ask is, do you have any pain or paresthesias (i.e. tingling, shocks, electrical feelings, burning, prickling, etc.)?  If some of those are present, i.e. there is both a motor and sensory component, it virtually eliminates things like MND and point towards some type of nerve impingement (whether in the neck, carpal tunnel, cubital tunnel etc.) or a neuropathy (which of course can have many causes).  Doctors only even think about ALS (as well as many other possibilities) when a patient presents with true clinical weakness unaccompanied by any pain or sensory symptoms.

Also, the fact that your sensory symptoms have now spread to your ankles and calves also completely points away from ALS, because ALS does not spread that quickly.

BTW, why do you think a pinched nerve would go away so quickly or come back only with certain activities?  It all depends on what is causing the entrapment and the degree of irritation.  Symptoms can be quite severe even without actual impingement if there is a lot of inflammation around a nerve or nerve root and can last weeks or months.  Others are lucky and it goes away more quickly.        

[anxietyprince 4]

I appreciate you as I have an appointment with my GP today. I’ll just tell him about HA & everything feeling tired. If I get reassurance I will totally be ok as I know ALS rarely gets by a doctor let alone a neurologist. I also figured that it might be a RSI issue in wrist as they can present those symptoms for weeks and months - I did used to lean on it when on my computer/sitting in class - as well as I went through a heavy video game phase - I know all of this makes me sound stupid as it looks obvious to be because of these activities but I played college baseball as a catcher and always had injures/aches - just never felt one like this one & I guess that’s whats caused my HA to flare up in this case. Just a bad coincidence I suppose.

[DoxieMoxie 316]

5 minutes ago, anxietyprince said:

I appreciate you as I have an appointment with my GP today. I’ll just tell him about HA & everything feeling tired. If I get reassurance I will totally be ok as I know ALS rarely gets by a doctor let alone a neurologist. I also figured that it might be a RSI issue in wrist as they can present those symptoms for weeks and months - I did used to lean on it when on my computer/sitting in class - as well as I went through a heavy video game phase - I know all of this makes me sound stupid as it looks obvious to be because of these activities but I played college baseball as a catcher and always had injures/aches - just never felt one like this one & I guess that’s whats caused my HA to flare up in this case. Just a bad coincidence I suppose.

Absolutely be honest with your dr, tell him your symptoms, and that you have HA and fear ALS.  You might as well put it all on the table so your dr has the whole picture and can do his best to reassure you.  Just don't expect him to order a bunch of ALS tests for you; if he's not concerned, you shouldn't be either.  On the other hand, if he does order some tests, consider that he may well do it for your peace of mind, more than medical necessity.  

Good luck!

[plac8170 7]

Deleted post at others request

 

 

Edited March 19, 2019 by plac8170
Deleting post at request of members

[anxietyprince 4]

8 minutes ago, plac8170 said:

Just to chime in on the brisk reflexes.. I went to my neurologist yesterday and said I had been self testing my knee reflexes and they were really hyper reflexive. She asked me to show her how I’d done it and I had been banging them with my phone. She laughed and said “well of course they’re going to look like that when you hit them that hard”. She used her reflex hammer and did different variations of force to show me that the harder you hit them the more “brisk” they’ll be. Then she used her finger and tapped on my knees and said “now if I could elicit your reflexes by just tapping with my finger.. THAT would be hyper reflexia and I would be concerned.” 

I also was convinced I had hand atrophy and she looked at what I SWORE were dents on the top of my hand and wasting away palm muscles. She tested my finger strength and said if I had atrophy my fingers would have collapsed in but they didn’t. Losing muscle=no strength to keep your hand open. 

I have body wide twitching (even in uhmmm... some interesting places... to put it appropriately), hand cramps, leg cramps, arm cramps, feet cramps, and a feeling that my hands just aren’t working right. I feel like my legs stiffen up and they might collapse. I am FAR into the ALS rabbit hole and I’ve consistently told myself the second I have my EMG done at the end of April (if it’s clear god willing) I’m climbing out. 

 

 

I’m the dame rabbit hole, left hand feels tingly & weak for 3 weeks and now left foot same feeling. Can still do everything normal I just feel off, the anxiety doesn’t help but I don’t know what’s what at this point. Left arm just gets tired. Twitching started in left side but now everywhere mostly still left. Praying for you and that my neurologist says everything’s all good. All I know is even if we do have worst case scenario we should be living our best life in the good years we have left. Go grab a beer, watch a funny movie with your family, if it’s as bad as our anxiety tells us hell we only have a couple years left. Fuck it

[ZenCube 59]

42 minutes ago, plac8170 said:

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Edited March 19, 2019 by ZenCube
deleted.

[plac8170 7]

I was just saying how she reassured me. I’ll delete the post. 

[anxietyprince 4]

anyone else here have weakness in limbs any point in time? 

 

If not shouldn’t be worried about ALS

[ReBee53 1]

Thoughts are always running in my mind and can't focus on what I'm should be doing I have take something stop the thoughts and smell scents help go to sleep.

What do you use help thought the day? 

I'll show my's https://www.greenroadsworld.com/?rfsn=2391388.cd686

[Concerned-pa 17]

Figured I should update. Had my EMG today, and they screwed up the order. I only had the upper extremities done. Definitely no ALS (not sure if I need the lower tested for ALS), and only slight Cubital Tunnel in both arms. Still experiencing tingling in the feet off and on, primarily after running and impact exercises. Get tingles in the truck when driving that goes away when I get out. Right now, my right thigh feels like it’s burning a little and I’m getting occasional spread out pricks on top of the thigh when lifting my leg every so often.

Who knows...