My ALS fears are ruining my life

[plac8170 7]

I’ve posted about this on here before but a new symptom popped up and of course I’m stupid and googled. My legs now shake when I lift them up. Even when I’m just sitting in my chair and lift them out straight they shake immediately. 

This of course along with everything else pretty much makes me feel doomed. I have an EMG at the end of April and I am literally counting down the days. 

And before anyone asks... yes I’m on anxiety medication. Yes I’ve started seeing a counselor. 

I just can’t stop pretty much thinking about this every second of everyday and how I’ll need a wheelchair and die in 5 or less years. Depressed would be an understatement for how I feel. 

[DoxieMoxie 313]

Legs shaking when you lift them up is not how ALS presents.  If you were completely unable to lift or were dragging one of your legs, I'd recommend seeing a dr.  Even if that were the case, there are so many other more likely causes that would have to be ruled out.  But both legs shaking when you lift them? Don't know what it is, and could be purely anxiety, but definitely not ALS.   

[ZenCube 58]

29 minutes ago, plac8170 said:

I’ve posted about this on here before but a new symptom popped up and of course I’m stupid and googled. 

 

Brother, this one's on you. You just shot yourself willingly with a big fat load of cyanide dread. The sad thing is that it never serves as a lesson, all right. Now that you are poisoned with Google, you are regretting your move but you'll search up the next symptom regardless. It's an addiction. I really come to believe it's an addiction to fear, that compulsion. We all know Googling NEVER helped one of our kind washing off fears, only enhancing them to the point of madness. Yet Googling we continue, over and over again, like it was pure heroin on a craving junkie.

Sorry for the harsh words, but sometimes it's what one needs to lay off the syringe. Two years ago I nearly killed myself out of despair, nearly making my two little daughters orphans. It all came from Googling symptoms that were vaguely consistent with ALS, and then all spiraled into sheer madness. Guess what, I'm far from out of the pit, but I can live with it. Hear me out brother, I would have blown my brains out hadn't I thoroughly decided to STOP looking for evidences of a disease so dreaded. Because guess what, there could be an argument in looking up for cancer signs, aka: if I take it early enough, I may have a chance. For ALS, there's no such thing. It's curtains whether you pick it up in the early stages or later on. There's nothing out there to look for. Either you have it and it will eventually bring its hallmark muscle failure or you don't.

Plac, I'm telling you that for your good. I could bet a thousand dollars that you don't have ALS, but I'm pretty sure you are wasting your life on that hobbit. 

That was some wall of text, but I hope it could shake you into breaking the horrible habits that are killing your mind right now.

[plac8170 7]

I mean... I already get enough “harshness” and more from doctors I see so the last place I want to hear anything like that is a forum where everyone here suffers from health anxiety and people make comments like this.. 

Its sad. I don’t have any family or friends so I don’t have a support system and I found this place and it helped me until this comment. 

But thanks I guess? 

Oh, and I’m not a “brother”. I’m a girl. But whatever. 

[ZenCube 58]

I'm just trying to put some sense into you and help you avoid the traps. My bad for the 'brother' thing, although we re all brothers and sister of the same ugly madness, I suppose. My way out was the hard way, there s no other if you want to get yourself into life again. A week ago or so I pmed you and advised you the three iron rules to get there: no google, no strenght tests, no twitching scrutiny. 

Its up to you to try and apply these rules. 

Sorry if I went a bit hard on you, I thought it was for the best.

[DoxieMoxie 313]

1 hour ago, plac8170 said:

I mean... I already get enough “harshness” and more from doctors I see so the last place I want to hear anything like that is a forum where everyone here suffers from health anxiety and people make comments like this.. 

Its sad. I don’t have any family or friends so I don’t have a support system and I found this place and it helped me until this comment. 

But thanks I guess? 

Oh, and I’m not a “brother”. I’m a girl. But whatever. 

I completely understand how you feel.  It is a miserable, lonely, fearful place to be.  And I think Zencube gets that too -- he was trying in his way to shake you and get you back to reality.

I strongly stand by my earlier comment; nothing you describe even remotely is a symptom of ALS.  By all means, if the shaking persists, work with your doctor to figure out what is causing it, but you need not fear ALS.  

[Jgriffin 32]

1 hour ago, plac8170 said:

I mean... I already get enough “harshness” and more from doctors I see so the last place I want to hear anything like that is a forum where everyone here suffers from health anxiety and people make comments like this.. 

Its sad. I don’t have any family or friends so I don’t have a support system and I found this place and it helped me until this comment. 

But thanks I guess? 

Oh, and I’m not a “brother”. I’m a girl. But whatever. 

I understand your fears. You accept there irrational but cant ignore the physical symptoms. Doesnt sound like als but dont stop posting and seeking reassurance and someone to talk to because the previous comments hurt you. Its hard when you dont know someone and how they speak so easy to think their being a jerk. I believe he was trying to snap you out of it. I could be wrong

[ZenCube 58]

Indeed I was. I feel for everyone caught in the nest of ALS. As I said, I'm still not totally out of it myself, and I've certainly been where Plac is right now. But there's a way out. I wanted to stress how dangerous it was to look for symptoms on the internet. How many time have I ruined months of hard work, climbing step by step out of the rabbit hole just to crash down again only because I peeked through Google just once.

Plac, Ive read all your posts, and I can assure you nothing, I mean nothing holds any hallmark of ALS presentation. Not twitches nor shaking is in any matter a sign of ALS. Sorry again if I caused more trouble than good. Sometimes you just miss you target trying to help someone out.

[Iugrad91 501]

So did you figure this out because you’ve been testing yourself for a while and it just started happening or did you randomly lift your legs and notice them shaking? If it’s the first, then you need to stop self testing. You’re not a doc and don’t know what you’re looking for. If it’s the second, how do you know your legs haven’t always done that? Mine shake when I raise them and hold them up and I don’t think twice about it. What makes you think this is a “symptom” of something?

I think you also need to consider why you come to this forum. Is it for reassurance? Because we know that doesn’t work with health anxiety. It’s a vicious cycle of continuously needing more reassurance over and over. Is it for sympathy? Because sometimes you may get a kick in the pants when others who have gone thru what you are now try to get you to stop the spiral. If you went onto an ALS support site posting your symptoms multiple times they wouldn’t be as nice as folks on here.

If you are seeing a counselor I’d suggest discussing this honestly with them and listening to what they say. If you’ve been seeing them for a while they surely have given you some coping mechanisms and tools to deal with your anxiety. They take practice but you have to work on them every single day. I hope you can find some peace before your EMG in a couple of weeks.

[JOYCICLE 654]

Sometimes it takes tough love. I never had any real improvement until I got really mad at myself and my symptoms and got a  F this attitude about it.  

 

[Madmax 5]

@plac8170

I was diagnosed with benign fasiculations 13 years ago. Was diagnosed by 4 doctors after 2 EMGs, one MRI and multiple neuro exams. After some time the fasics went Away completely.

Then it started back in February this year after few months of extreme stress. And it started to happen all over the body 24*7. Went to a neurologist (an als specialist) and he did a neuro exam and said it is benign. Asked me to come back after 6 weeks for an EMG if I want one. I was okay for a week after the consultation and decided to see a psychologist for the 1st time in my life. And guess what, it was a sheer bad luck that the psychologist himself suffered from  some sort of motor neuron disease . I ran to the neuro after 3 weeks because my anxiety just went through the roof after the psychologist session.

In my second appointment, the doctor did another clinical and emg/ncs. I asked him some questions while he was doing the tests and he was quite patient.

In his experience, weakness usually preceded fasics in mnd/als. And also benign fasiculation are completely different to als fasics.they look very different in the emg study.

I still have my anxious moments about als but you know what. Don’t let this fear ruin your life. I am 99.999% sure that you have nothing apart from some underlying stress and anxiety.