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SomeUser44

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Learn about ALS
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sorry for long post, I made both a short and long version.

Longer version

Almost a year ago I started noticing anytime I wake up and clinch my right hand into a first my pinky would "snap" always at the same spot and very quickly move about 1". Since then this has started happening to my left hand also (but not as bad as my right hand). This "problem" tends to go away within 3-5 minutes after getting up.

More recently (about 3 months ago) I started noticing this weird twitching in my thumb of my left hand. So holding something like a chicken wrap id feel my thumb micro twiching and having problems holding steady (note: Ive never dropped it but I can feel my hand doing this micro-twitching). Now I find its harder to find a conformable spot for my left hand without these micro twitching. Doing things like reading a manual or placing a page in a binder causes lots of shacking. Holding water glasses is also a tad harder

I also got twitching in my right arm, face and legs. Id say 70% of is left arm/hand, 25% is face (above eyes) and rest is my right hand and my legs.

1# So, can the pinky snapping be related to ALS? It does not really seem to fit considering my right hand is overall in the same condition as it was 8 months ago, while in the past 3 months my left hand has both the pinky snapping and the thumb twtiching (so in other words, it would mean progression is much slower in my right hand even tho it started there).

2# More recently (3 weeks or so) I notice cramping in my left foot. It hurts for about 1-2 minutes when I walk after waking up. Is this cramping normal for early ALS (to only hurt after rest?).

3# I can still do 100 reps of this hands strengthening squeezing things. So assuming I do not count my left hand as weakness, is it normal to have overall body twitching (although most happen in my left arm/hand)?

4# Face twitching (eyebrow area) is relatively rare for ALS right?

Short version of symptoms
  • ~10-12 months ago: Pinky snapping in right hand
  • ~5 months ago: pinky snapping in left hand
  • ~2-3 months ago: micro twitching in left hand (thumb in particular)
  • ~2-3 months ago: Started thinking maybe I have ALS
  • ~2-3 months ago: Overall body twitching, most in left hand/arm or face
  • ~1 month ago: Cramping in left foot when waking up
  • ~1 month ago: Numbess in some fingers sometimes, particularly when I support my head with my hand/arm.

Do you think I have ALS? The numbness in fingers and some face twitching is apparently not regular symptoms for ALS, but it may be the stress causing it. I am kind of hopeful I have something like multiple sclerosis (but that does not fit with foot cramping).
 
sorry for long post, I made both a short and long version.


Do you think I have ALS? The numbness in fingers and some face twitching is apparently not regular symptoms for ALS, but it may be the stress causing it. I am kind of hopeful I have something like multiple sclerosis (but that does not fit with foot cramping).

WOW! Nothing sounds remotely like ALS, which of your doctors suggested it could be ALS? Maybe the stress is coming from statements like " I am hopeful I have something like multiple sclerosis" ? You seem disappointed the symptons don't fit? Why do you wish to have these diseases?
 
Seriously, multiple sclerosis isn't much better.

Do you think I have ALS- NO
#1 Pinkey Snapping related to ALS- NO. You just woke up, why would you put your body to such a max test by squeezing it immediately into a fist upon waking? That is just asking for muscle cramping and twitching.

#2 Cramping in left foot after waking- again....you just woke up and your body was at a dead rest. Cramping is common if you get up and stretch muscles too fast.- NOT ALS symptom.

#3 overall body twitchiness without weakness- NO ALS
#4 face twitching without weaakness- again NO ALS.
Summary- stop testing your body after you have just woken up. Give it a chance to get going for pete's sake! And once again, you do not have any symptoms of ALS.
 
Do you think I have ALS?

No.

I am kind of hopeful I have something like multiple sclerosis (but that does not fit with foot cramping).

Try benign fasciculation syndrome (BFS). Not a progressive disorder and won't kill you. It is a much better fit for all of your symptoms. a b o u t B F S dot c o m.
 
Seriously, multiple sclerosis isn't much better.

Do you think I have ALS- NO
#1 Pinkey Snapping related to ALS- NO. You just woke up, why would you put your body to such a max test by squeezing it immediately into a fist upon waking? That is just asking for muscle cramping and twitching.

#2 Cramping in left foot after waking- again....you just woke up and your body was at a dead rest. Cramping is common if you get up and stretch muscles too fast.- NOT ALS symptom.

#3 overall body twitchiness without weakness- NO ALS
#4 face twitching without weaakness- again NO ALS.
Summary- stop testing your body after you have just woken up. Give it a chance to get going for pete's sake! And once again, you do not have any symptoms of ALS.


THe hand thing never bothered me. I was hesitant to mention it to my doctor and I was hesitant to mention it here (because it does not sound like ALS)... Like ive said, it hasnt really gotten worse. And its not making a fist, I can move my pinky as slowly as humanly possible and it still snaps instantly when it reaches a certain position (seems to snap faster then I can move it when its normal). I even notice a small minor slow snap from time to during the day (but its minor).

The foot problem is new, but the fact its happening is odd. Its been happening without fail for the last few weeks, and the pain is up there for a problem that goes away so fast.

But all that is nothing compared to my left hand. Holding food is getting harder. I got a new touch screen phone and I almost always only use my right hand now because its more accurate. Today I was walking/biking to work with ice coffee and a few times I was worried id drop it because of the micro-shaking (my good hand was being used on my bike).

My doctor wants me to wait a month without putting my left hand over my head (especially when sleeping) and wants me to sleep on my back when sleeping. Its almost a month and ive been very careful, despite this it has only gotten worse.

Ive also dealt with cancer myself. I have the same "crazy feeling" about having ALS when I suspected I had cancer.... and yes I know cancer (at least my cancer) is nothing compared to ALS. But I just cant shake the feeling, especially when things are only getting worse...
 
If I were to tell you that you probably have ALS, how would you know you could trust my judgement or know if whether or not I'm not just some nut job on the other end of a computer keyboard?

How did the doctor come to the conclusion you had cancer? I'll bet he ran some tests.

Same process stands for finding out what is causing your current symptoms. You are going to have to go through a battery of tests by a qualified medical doctor.

Good luck!
 
Your symptoms are much more likely to be trapped nerves. Ask your doctor to see if that could be the problem. Cramps are often deficiencies of some nutrient. We all get cramping from time to time.

Good luck. Lots of simple things need ruled out before ALS would even be a consideration
 
well ive been paying a lot closer attention to myself and ive noticed a few things, so I got a few questions I hope a few can answer (the more the opinions the better).

1# With ALS did you (or do you still) find symptoms get worse after exercising? example: stiffness in only one hand for 2 days after doing a relatively "light" hand rep exercise?

2# When you have stiffness. Did you notice certain times of the day when it gets worse? OR it getting worse after rest?

3# How fast was/is the spread from one part of the body to the other parts in relation to the first initial symptoms getting worse?

4# Anyone experience the feeling on not getting enough air (drowning feeling) when drinking water/liquids even when you can hold your breath for 3-5 times longer then the entire time it took you to drink?
 
1# With ALS did you (or do you still) find symptoms get worse after exercising? example: stiffness in only one hand for 2 days after doing a relatively "light" hand rep exercise?

No, the muscular symptoms of ALS aren't dependent on amount or intensity of exercise, but you can do further damage to the muscles by straining them.

2# When you have stiffness. Did you notice certain times of the day when it gets worse? OR it getting worse after rest?

ALS symptoms are fairly constant in one direction: once you have them, they stay and they only get worse until all function in the particular muscle is lost and the muscle is completely paralyzed.

3# How fast was/is the spread from one part of the body to the other parts in relation to the first initial symptoms getting worse?

There is no single answer to that question -- every patient's progression differs.

However, symptoms like twitching popping up in several areas of your body in a matter of a few days or weeks points away from ALS and toward things like BFS and post-viral syndrome.

4# Anyone experience the feeling on not getting enough air (drowning feeling) when drinking water/liquids even when you can hold your breath for 3-5 times longer then the entire time it took you to drink?

Sounds like a classic anxiety reaction to me. Why would you be afraid of drowning while drinking a glass of water?

Most of us don't overthink and overanalyze our swallowing unless we have repeated choking problems. The self-testing that you are doing is pretty worthless and you stand a better chance of injuring yourself than getting any enlightenment from them. Not that that is going to stop you from doing it -- you're caught in the gravitational field of the black hole that is health anxiety -- but I thought I'd at least toss that rope if you choose to use it to free yourself.
 
Man, I had a real jewel of a post going and then took a 2nd look and reminded myself that my alter-ego has been imprisoned and I've promised to be nice.

May I suggest, politely, a change of focus. Try surrounding yourself with good music that can aid in creating an atmosphere a little more stress-free.

We've had testimonials from people that have quit examining themselves and subsequently found their symptoms dissipate. Even those who have a diagnosis will tell you that stress exacerbates their illness.

BFS/PNH/CFS are real boogers and nothing to make light of. People with any of these often have symptoms that make the day really uncomfortable for them on a continual basis. One of us suggesting you may have BFS is no light thing but much, much lighter than if we were to say something like, "Yes, you probably have ALS." Keep in mind, we are not doctors here.

I believe we live in a world that over taxes the mind, body and spirit and it is little wonder that so many experience the mind, body or spirit breaking down.

Best of luck!
 
No, the muscular symptoms of ALS aren't dependent on amount or intensity of exercise, but you can do further damage to the muscles by straining them.

Hmmm interesting. Right now problems are always there in my left hand, but things definitely get worse then back to normal after "working out".


ALS symptoms are fairly constant in one direction: once you have them, they stay and they only get worse until all function in the particular muscle is lost and the muscle is completely paralyzed.

What I find weird is my foot pain in the morning... Im even starting to notice it during the day sometimes now, or at night when ive been lying in bed for a while and get up.


Sounds like a classic anxiety reaction to me. Why would you be afraid of drowning while drinking a glass of water?

I know 100% I wont drown, this is also not anxiety. Its the "drowing feeling" without explanation. Kind of like when you hold your breath for too long and your brains sends the "you need air now" signal. This problem has been happening for about 8 months (several months before I considered ALS). I got a theory what is causing it, but it doesnt fit becaise the problem that I think may be causing it is only 7 months old.... This is a very, very weird problem :\

Most of us don't overthink and overanalyze our swallowing unless we have repeated choking problems. The self-testing that you are doing is pretty worthless and you stand a better chance of injuring yourself than getting any enlightenment from them. Not that that is going to stop you from doing it -- you're caught in the gravitational field of the black hole that is health anxiety -- but I thought I'd at least toss that rope if you choose to use it to free yourself.
tnx, part of the problem with ALS is how differently it effects people. So im having problems figuring this out. There is so much conflicting information on the Internet on ALS.
 
Sigh

Foot cramping is quite common in MS, actually--many areas cramp and are painful in MS.

You need to get answers from a doctor. Trfogey and kell both tried to answer you--which obviously offered you no reassurance, which means you need to see a doctor and get answers there, as our answers aren't what you want to hear.

Good luck to you. By the way--it's very possible your hand issues are being caused by carpal tunnel or some other kind of entrapment-or possibly your neck.

What in the world even made you THINK ALS? (That's a rhetorical question, no need to answer)

With 8 months of symptoms, if it WAS ALS, you'd have loss of muscle or at the very least loss of use by this time. If everything still works, and your issues are mostly pain -- it' snot likely ALS.

That snapping finger can be a trapped ulnar nerve.

I couldn't do 100 reps of a strength ball if my life depended on it. Enjoy your life and forget ALS.
 
tnx, part of the problem with ALS is how differently it effects people. So im having problems figuring this out. There is so much conflicting information on the Internet on ALS.

What gives you the idea that ALS affects people differently? ALS kills motor neurons in the brain and spinal cord. That's a very simple mechanism and the effects of each type of motor neuron death are well-known -- flaccid or spastic paralysis, depending on which type of motor neurons are the ones killed. The only thing that differs from case to case is which part of the brain or spinal cord ALS starts in and where and how fast it spreads. The end result is the same -- muscles become paralyzed and can't be used any more.

Now, which of your muscles have become paralyzed -- partially or fully? You say that these weird symptoms have been going on for a year. The body part where all the problems started should have a substantial disability by now. Tell us about what your disability is.
 
Long and short of it. ALS. Your muscles die. Then you die. That's not confusing or conflicting is it?

AL.
 
With 8 months of symptoms, if it WAS ALS, you'd have loss of muscle or at the very least loss of use by this time. If everything still works, and your issues are mostly pain -- it' snot likely ALS.

That snapping finger can be a trapped ulnar nerve.

I was never worried about the snapping finger. In a few weeks it will have been a year since ive had it on my right arm. I just mentioned it *incase* it was related. Some people live over 10 years with this, and I thought may I just had a very slow progression or something. Figured it was worth mentioning just in case. But I do agree now, even if I have ALS, the snapping figure thing is not related.

I couldn't do 100 reps of a strength ball if my life depended on it. Enjoy your life and forget ALS.

Well I used to do over 100 reps if I wanted to (120-150 was normal hand workout), now I kind of need to force and push it to make 100 on my left hand. So im 100% sure there has been a deterioration, but it just may be me aging (im 24 now) or maybe me not doing it as often as I used to a a teenager...

What gives you the idea that ALS affects people differently?

Few examples:

Ive seen some sites say tingling is NOT ALS. IVe seen other say tingling effects a good percentage of ALS victims.

Ive seen some sites say ALS 100% does not effect eyes/bowls/etc, ive seen others say it does effect some people in the later stages.

Ive see MANY sites say the mind stays 100% ok, yet ive read some sites (and from some people who have this) say there are some changes to the mind in the later stages.

Ive seen sites say ALS with twitching and cramps is rare as early symptom without weakness, yet ive also seen many sites say otherwise (including peeps here).

Some seem to live months after diagnosis while others years (and even a decade). So its hard to figure out my progression.

... and all that is just what I remember. Lots of conflicting information.
 
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