Old 02-08-2017, 10:53 PM #1 (permalink)
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Default Losing my mind over ALS

I am a admitted hypochondriac, at least in the past, though I know that because I am, doesn't mean I am always going to be wrong.

So, about 2 days ago I had a massive panic attack at work (not related to ALS) due to severe vertigo post-plane ride. The rest of the day I was very upset, nervous, scared. I didn't do anything strenuous, I just cashiered all day. That night I couldn't sleep in my bed cause it made my vertigo worse so I decided to try and sleep on the laZboy..failed miserably.. I tossed and turned for 6-7 hours before getting into bed and trying that. That morning, I noticed a twitch in my left knee cap, to the left of my kneecap to be exact. I didn't think anything of it seeing as muscle twitches are not abnormal for me. So the day went on well, and when I went to bed, I slept very well but when I did wake up periodically, I noticed my knee cap was really twitching, as was the right side of the knee cap..and it started to feel like it pressured or tense..but my muscles were loose. Kinda like the RLS feeling you get when you feel like you need to move your legs.
That day, and today I notice this doesn't just happen when I lay down, it happens when I am standing up if say.. I squated, or ran..and then stood still..it would twitch and then fade off. I notice my butt on both legs is sore, and my upper thigh on my left leg is sore..not a cramp, but like I overworked it kind of sore. I mean, I did do a lot of squats and tests yesterday which could be why but I didn't think I overdid it.

I don't have any atrophy that I noticed (I measured my knees and thighs to each other, almost exact)...I can bounce, jump rope, run, walk, stand on tippy toes, press things between my thighs. It's like, even though my knee cap is twitching and feels tense or something, I still have the same strength.

I am 29 years old, and female btw..I don't have a family history of the disease..I am just worried. I am contemplating going to the doctor but seeing as I have been to the doctor for various other ailments about 16 times in the past 3 months, my doctor is sick of me and I feel like I am wasting wax payer dollars, and my own...though...I AM scared. I thought, of any place to vent or talk about this, this would be the site. I mean, should I truly be worried? Or is this likely benign....
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Old 02-09-2017, 03:59 PM #2 (permalink)
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Default Re: Does this seem like ALS? I am scared

Quote:
Originally Posted by Atsugi View Post
"my doctor is sick of me and I feel like I am wasting wax payer dollars, and my own...though...I AM scared. I thought, of any place to vent or talk about this, this would be the site. I mean, should I truly be worried? Or is this likely benign..."

You are not wasting tax dollars, you should be worried, and it is not benign. It's just NOT ALS. Sounds like a solid case of something related to the mind. Although I am not a doctor and I won't pretend to diagnose you, I do know ALS fairly well and you did not describe it in the least.
Has your doctor given you treatment or diagnosed you or referred you out, perhaps to a mental health professional? Panic attacks, ruining your sleep, and worrying about fatal diseases can be a real "life-limiting" problem.
Thank you for your response and taking the time out to read my post. I am curious, especially since you are familiar with the disease, you said that "Although I am not a doctor and I won't pretend to diagnose you, I do know ALS fairly well and you did not describe it in the least". I am curious what it is I said that indicates that it doesn't sound like ALS?
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Old 02-09-2017, 04:05 PM #3 (permalink)
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Default Re: Does this seem like ALS? I am scared

I did however notice today that, upon measuring the circumference of my thigh area, my right one is slightly bigger than my left (the problematique one) which obviously made me immediately go to the mirror..and I noticed that (I always had a significant thigh gap) that the shape of my inner left thigh is odd in spots in comparison to the right, like it looks mis-shappen. Last night I (thankfully) did not have knee cap twitches while sleeping and I slept great, however now that I am awake, the knee cap STILL twitches when I squat and then stand up, and squatting in and of itself 'feels' more difficult cause my thigh burns when I do it. Basically the exact feeling you get after you pumped iron for a hour and then trying to do it the next day, you can't your muscles are like "oh please no, I am too sore" lol.

Other than that update, there is nothing new..
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Old 02-14-2017, 03:08 PM #4 (permalink)
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Default Losing my mind over ALS

So, about 8 days ago I had twitches in my kneecap after a restless, nervous night. The next day was fine...I didnt pay mind to it..then that night..despite sleeping better, my knee cap twitched a lot followed by tightening. This scared me and I immediately thought ALS. After a few days of twitchy knee caps and occasional calf, other calf, Buttocks, toes, feet, and lip twitches..I went into a urgent care place. The doctor performed the simple hit against the leg and arm with a instrument thing, took my blood...said I am not anemic or have a electrolyte issue. My reflexes were good and when I mentioned ALS, he looked at me like I had lobsters coming out of my ears.

He said "im not a neurologist, but I can say it is severely unlikely, especially at 29 years old...like a 1 in a million chance. Also, weakness usually comes before twitching. You just twitch..".

After that, I read about bulbar onset, I looked at my tongue repetitively and noticed it shakes when I stick it out like 75% but not at rest or when I stick it out full force. Now ever since, I have trouble singing and talking sometimes. My throat eels tight, my tongue feels thick and my neck is sore and stiff. My tongue will actually twitch once, maybe twice a day which I heard never happens unless you have ALS.

Now, yesterday I noticed my left arm (my dominant arm) felt odd. I did some weight lifting (10lbs each arm) and did equal reps but my left arm tired out within 10 reps..and my right arm was fine. The fact my dominant arm is weaker freaked me out...and the rest of the day my arm was sore..I couldn't sustain holding anything flat in my hand without struggling and shaking..right my right hand when I did it felt like no big deal. Now today, both arms are sore but left arm is still the weakest.

Sincerely worried about that. I am a 29 year old girl, I weigh 110 lbs, I am to be married in a few months...and I am terrified I am probably dying...like, there is no other reason for dominant arm not being as strong as my right arm. I also hear ALS effects the dominant side first. My leg and arm issue were both on the left side, however I have twitches in my right leg too..for instance...last night I had a twitch in my foot at the same time I had one in my buttocks..then 5 seconds later it twitched my calf, then a few seconds later my abdomen.


I really just want to hear from people on here, im worrying myself sick...
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Old 02-14-2017, 03:23 PM #5 (permalink)
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Default Re: Losing my mind over ALS

Make an appt with your primary care doc. We are not doctors and can not diagnosis you on-line, although none of your symptoms seem to indicate ALS, as the ER doc said. Twitching is so common that it is diagnostic of anything. Going from twitching and tired arms to a terminal illness without even a pcp appointment seems a bit of an over reaction.

Focus on your anxiety, stay away from Dr. Google and get ready for your wedding.
Best wishes.
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Old 02-14-2017, 04:06 PM #6 (permalink)
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Default Re: Losing my mind over ALS

Agree with Tracy. Congrats on your upcoming wedding.
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Old 02-14-2017, 06:08 PM #7 (permalink)
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Default Re: Losing my mind over ALS

Any more opinions on the matter?
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Old 02-14-2017, 06:31 PM #8 (permalink)
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Default Re: Losing my mind over ALS

That is a lot of symptoms to develop within an 8 day period. As others have said, make an appointment with your PCP. Anxiety can cause a lot of issues and DR Google is not your friend. You have already been told it does not sound like ALS.
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Old 02-15-2017, 12:34 AM #9 (permalink)
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Default Re: Losing my mind over ALS

If twitches in a knee caused you to "immediately think of ALS," that is your biggest issue. Whatever anxiety, fear or memory is driving that leap from logic, find some help and root it out. Felicitations on your wedding.

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Old 02-16-2017, 04:03 PM #10 (permalink)
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Default Do ALS fasticulations behave like this

Is it more of a sign it is, our is not ALS related and why?

It happens when I lay down or am still, movement gets rid of it. When it does happen, itll be like, a twitch in my foot at the same time as a twitch in my lip or other foot or somewhere else distant. That, or I will get a twitch in my foot, then my thigh the next second, then my tongue, or my finger...all within about five seconds of each other.



I have had these twitches for a week and a half now...and it is always only one twitch or maybe a flutter...It started in my knee cap and continues there sometimes, but yeah, I can have a knee cap twitch and a lip twitch at the same time or a toe twitch.
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Old 02-16-2017, 04:14 PM #11 (permalink)
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Default Re: Losing my mind over ALS

Mod note- Please keep all posts in a single thread. It helps people understand the timeline of your posts.

Have you seen a doctor? What is their take on your symptoms? Dwelling here, when you can real answers from a doctor who is actually observing and testing your reflexes, etc, would be way more productive for you and likely to ease your mind.

Twitching is only considered a symptom of als if it comes with a whole host of other symptoms. It would be like assuming you had lung cancer because you had a cough. Only a doctor can tell you if twitching is something to worry about based on a physical exam.

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Old 02-16-2017, 06:25 PM #12 (permalink)
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Default Re: Losing my mind over ALS

I did go to another doctor, specifically a PA who IMO was terrible, she was probably 24 years old and wasnt that good. I asked her if it is normal that I can elicit both my legs to move involintarily when I tap my patella with my fingers, which I can, she then used a tool and said "well hyperreflexivity can be normal" I said, " I am hyper reflexive ?" And she said "well no I didnt say that, I mean I have seen way..way worse". My leg moves out about 8 inches when I tap my patella firmly...and rocks back normally. Same exact response on other leg. She also said "well with ALS, most people don't come in till they are far progressed, which is why I want to see you back here in a month to see if the anxiety meds worked, cause stress/anxiety never causes fasics for over a week".


That whole day after I felt so scared. Then I realized something, well, I know that the symptoms are never universal to ALS, but some are incredibly frequent.


1: I keep hearing about how ALS fasics are constant, like all the time. Is that true for when you move or go t sleep? Mine cease when I move or am asleep, but resume upon waking.

2: Mine are sporadic, as in..I will get a 'pop' feeling in my foot, or my lip, or my leg. My hot spot is my knee cap, and that might flutter or pop once, but otherwise its anywhere else in my body.
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Old 02-17-2017, 12:23 AM #13 (permalink)
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Default Re: Losing my mind over ALS

I've read everything you've written, and I keep wondering if I've missed something: What, exactly, makes you think you're dying?

I don't get it. In my imperfect view, you definitely are spooked by this upcoming wedding. And it could be that that's the only problem.

Aside: Tapping your own knee is, I'm told by experts, really unreliable.
Twitches: There are several categories, different types. Must be observed by an MD. But I'm not sure I would bother. Twitches are part of many conditions, so they are not useful for diagnosing ALS. Mainly, twitches all over indicate stress.

There is no reason to think of ALS in your life, now or ever.
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Old 02-17-2017, 05:33 PM #14 (permalink)
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Unhappy I don't know what to think anymore

I have posted on here a few times, mainly as a update, but it seems new things evolve.

Ive had widespread faciculations for two weeks now, and every day it doesnt cease I get more worried. My knee cap was the initial issue, and now when I rest...id say about 30% of my faciculations are there and 70% sporatic (tongue, thigh, foot, etc)...I thought I could find solace in the fact it's more sporatic, but then I find that lots of ALS patients presented with sporadic twitches.

I thought I could find solace in the fact I didn't have any weakness, but then I found I had a spat where I was slow at writing, that fixed itself but then when I folded clothes, a sweatshirt seemed heavy so I tested it out by lifting weights..and now I notice I CANT EVEN ARM CURL 10lb WEIGHTS with my left hand....and I am left handed!. I tried, literally, my right arm could do it all day but I was struggling with my left arm...and as a result, I injured my left arm by overworking it and even as that let up, I still struggle to arm curl 10 lbs and youd think itd be stronger. Also, even 3 days after I 'overwrked' it...my thumb and hand trembled when I hold it at a angle, and everything still feels heavy with that hand...like I cant hold a gallon of milk straight out with one hand without my arm shaking. If that isn't clinical weakness, or start of, I dont know what is.


I can stand on either tippy toes but find my left calf burns more when I do it fit some reason..

I'm freaking out cause I cant arm curl like my right arm, my body twitches, and there is no other explanation than als..im only 29, I dont want to die......
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Old 02-17-2017, 05:47 PM #15 (permalink)
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Default Re: Losing my mind over ALS

Mod note- Stay on one thread. You have been asked to this before. Please do not open another thread again unless this one has been closed.
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