Concerned twitcher

[aw3524]

Hey all,

I've read the stickied threads and they've somewhat given me a ray of hope, but over the last few days I've all but convinced myself I have something like ALS. About a week ago I developed a very pronounced "throbbing" twitch in my left hand between my thumb and forefinger -- around this time prior (I believe) I did slam it in a door, but I'm not sure how that could cause that. It has been (as far as I know) constant since. A couple days later (though, by this time, I was severely stressed out about the possibility of a severe disease) I started getting random "one at a time" brief spasms all over my body.

Bit of extra info: the left hand twitch seems to vary in intensity over the day; there are times when I can feel it (like a heartbeat) but it's hard to position my hand in a way that it's perceptible. Other times it's very apparent from the outside and actually moves my thumb and forefinger noticeably, as well. My left forearm is currently feels a bit sore, but I've been obsessing over "testing" my strength since I decided I had ALS. I'm also a proficient typist -- as far as I understand it, with the location of the constant twitch, the first thing one would expect would be some clinical weakness there, but I haven't noticed any diminishing in my typing ability, letalone this being impossible.

 

[affected]

Hon as the sticky says - twitching means nothing at all.

 

[lgelb]

Montana,
Here's how you "unconvince" yourself. Spend some time at your local nursing home or homeless shelter, or the closest overpass where people huddle in the cold. Then tell them your story.

And yes, slamming any part in a door can temporarily get nerves in an uproar. Now go do something constructive with your good health. This ain't it.

Best,
Laurie

 

[aw3524]

Thank you for the responses. It is selfish of me to take your time, but I needed a perspective from someone who isn't myself.

 

[Blondrea]

Mod clarification: Blondrea's boyfriend was reported to have had fasciculations for two years, was noted as having hand weakness at a doctor's visit, and was unable to turn a key less than a week later. So to add to her post below, he had both weakness and twitching when ALS was first considered.

P/CALS: a gentle reminder that many reading these posts are terrified, as we all have been. Let's not type faster than the facts. Thanks to Blondrea and all who contribute to the Forums!
-------

Hi. My boyfriend had twitches, and no other symptoms, and was sent to a neurologist simply to put his fears at rest. Six months later, he was diagnosed with ALS. Believe me, it sucks.

 

[GregK]

Blondrea, I think you should avoid DIHALS.

 

[Atsugi]

Hi. My boyfriend had twitches, and no other symptoms, and was sent to a neurologist simply to put his fears at rest. Six months later, he was diagnosed with ALS. Believe me, it sucks.

Wow, That is highly unusual.

 

[affected]

In your first post ever on the forum Blondrea you said your bf was sent to a neuro who tested him and found clinical weakness in his hands.

So twitching was not the only his only symptom...

 

[Blondrea]

Hello. The neurologist didn't find clinical weakness. Later, an ALS expert did (at UCLA). He had twitches for two years before he had weakness in one finger on one hand.

 

[affected]

Honestly blondrea not arguing with you but this is really important for DIHALS

Your bf did not get diagnosed with ALS when he ONLY had twitching as a symptom.

Millions of people twitch and never develop ALS and our very important point here is that twitching on its own means nothing.

I can also only go by the wording in your first post here, if you meant something slightly different it did not come across that way.

He went to a neurologist recently, who said he tested weak in his hand.

I note that shortly after that his hand began to completely fail. This was a big red ALS flag. As we say here - it's not the twitches, it's the company they keep.

I'm only bringing this up here as living with health anxiety is a real hell. The people posting their fears here are suffering. So feeding anxieties by suggesting that if they are twitching now they may be diagnosed fatal in a couple more years seems a bit wrong to me. The statistics show that hardly anyone who twitches today will develop ALS in a year or two.

I would humbly suggest that discussing your PALS onset is better done in another section of the forum than here.

 

[lgelb]

Blondrea, please allow me to make the important point that clinical weakness (the only kind that matters in ALS) may occasionally hide behind symptoms that are more easily noticed, like twitching/cramping. Michael's inability to turn the key did not suddenly appear from nothing; many motor neurons have died by the time weakness becomes evident. That is why we so frequently ask DIHALS posters, "Is there anything that you can no longer do, period?" So this case, sadly, is the exception that proves the rule.

Best,
Laurie

 

[aw3524]

Hey all,

I'd like to provide an update and seek some input on my present situation. To recap, I came here about a month ago concerned about ALS (at the time, my only symptoms were a persistent twitch in my left hand and a vague stiffness in my left leg). Since then, I have seen two doctors:

• The first doctor (seen a week after onset) did the usual reflex stuff and some broad strength testing (legs and arms). Everything seemed normal.
• The second doctor (seen three weeks after onset) did the usual reflex stuff, the same basic strength testing, and some additional neuro testing (eyes, balance and some coordination, etc.). Everything seemed normal to her, too. She dismissed the twitch and said -- since I reported occasional sharp knee pain when putting a lot of pressure on my left leg -- that the stiffness might be attributed to that pain. She recommended some exercises.

As for my symptoms:

• The twitch in my hand has mostly subsided -- I know this was never a huge concern to begin with by itself. I feel like that hand is a bit less dexterous, but this could be my imagination/the result of "testing" that hand a lot.
• More troubling, I seem to have developed a rather "stiff" gait. This is less uncomfortable in the morning when I wake up, but after walking for awhile (say -- from the parking lot to class) my leg feels like it's constantly "seizing up" and I walk with an outstretched leg, not bending at the knee.

How concerning is any of this? I'm seeing my PCP on Monday and will push strongly for a referral to see a neurologist, but I would greatly appreciate any insight I can gather before then.

 

[aw3524]

Forgot to add: I also am getting a strong resting tremor in my legs (seems like my pulse is visibly moving my legs, so to speak).

 

[Atsugi]

AW, there's no indication whatsoever that you might have ALS. With the symptoms you've reported here, I am absolutely certain that you have no more chance of getting ALS than anybody you might meet on the street. It's just not going to happen.

Don't push for the neurologist. Neuros are only trained and equipped and experienced in examining neurological problems. But do keep your appointment Monday with your PCP. GPs are experienced in leading health investigations toward whatever specialties might be required. Just present your symptoms, not your recommendations.

 

[gooseberry]

All I can add is you must trust your doctors. If you dont get new ones. Not believing what your told is not good for your health.

Twitching can mean anything, muscle tremor occurs with dehydration, and for many other reasons. Please work with your doctors.