A tad worried

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Still a little confused

Hello everyone, I wanted to thank those of you who replied to my original post. Though the replies were insightful and helpful it left me with a little confusion. In my research i've learned that one of the major requirements for diagnosis is damage to both UMN and LMN though i'm being told that it's basically not possible for ALS to begin in two places in rapid succession such as fasciculations/weakness in a hand + tongue or one foot + one hand etc. Am I missing something when I say that?
 
Re: Still a little confused

Just to clarify, I'm asking if it's possible for onset to occur in both Limb and Bulbar simultaneously?
 
Re: Still a little confused

ALS works in succession, generally bottom up (limb onset) or top down (bulbar onset).

Typically, a foot is the first to go, then that leg, then the other leg, the hands and arms, and finally, the trunk, neck and head.

One of the hallmarks of ALS is that is destroys both the Upper Motor Neuron in the brain and the Lower Motor Neuron below the brain stem.

Of course, non-ALS fasciculations are completely another matter. Nervous twitches brought on by anxiety tend to happen all over the body at once. My own twitches were/are kind of neat to watch on my face, hands, arms and legs. When I was incredibly stressed due to work, my stomach twitches were really huge, bordering on cramps. Finally, my neck cramps up very badly when I face extreme emotionally stress, and it's quite painful.

But ALS fasciculations are nothing like that. In my wife's case, a muscle would become paralyzed, then twitch as it attempted to recruit new pathways for nerves, so we could tell which muscles were being paralyzed by watching where the twitches were. Some people report that twitching occurs in a muscles prior to it becoming limp.

Eventually, every region of the body is paralyzed. This is a hallmark of ALS. Where other diseases might affect only the right side or only the top half, ALS eventually covers the whole body.

There is, in fact, a possibility of ALS consuming two regions in rapid succession. A rapid progression might occur where a the hands begin weakening before the legs are completely paralyzed. My wife had a very rapid progression. From her first symptom--footdrop--to being totally locked in where no muscles worked (including the eyeballs) was nine months. Thankfully, she died quickly after being totally locked in.

EDIT TO ADD: Her tongue was affected only after her arms and legs were completely limp and useless.
 
Re: Still a little confused

Thank you for your reply once again Atsugi. Your commitment to this forum is impeccable. I just had to ask because I'm having a really hard time today. My tongue has gotten to the point where I gag a few times a day. From a lump in my throat to tires easily to gagging and constant tiredness in 2 weeks. I know my problems at this point are nothing compared to others here and won't be for a long time but while I wait to book an appt with my GP, I feel like i'm losing it a little bit. Thanks again.
 
"I know my problems at this point are nothing compared to others here and won't be for a long time..."

In other words, despite being told your symptoms do not sound like ALS, you still believe you have ALS.

By the way, a common cause of globus (feeling lump in throat which isn't there) is anxiety.
 
>while I wait to book an appt with my GP, I feel like i'm losing it a little bit.

relax, forget ALS and internet self-diagnosis. Find someone who needs some help doing something and do that. volunteer. do the ice bucket challenge. and wait for a proper medical eval.

fwiw :)
 
Month of twitching turning into cramps

Hello everyone. Just a quickie update, I finally got a referral to neuro and since my last post in this forum i've had a development in the twitching in my legs. The spots that have been twitching have started to ball up into cramps. It's been about a week and almost every spot that was twitching has worked into a cramp that lasts for HOURS. One of the cramps in my calf lasted 12 hours. Does this sound like the symptom progression in effected muscles from ALS?. The pattern for me so far has been, twitch (long time) >> long lasting cramp at the site >> muscle relax >> twitch begins again. Also my tongue and speech muscles are on full time exhaustion now. I feel like i've been licking an icecream cone for 100 hours ALL the time now from wake until sleep. I've basically stopped saying words.
 
Re: Month of twitching turning into cramps

Also for those that have said dehydration might be my problem, I drink a lot of water throughout the day as well as a multivitamin daily. Oh also i've lost my appetite.
 
Re: Month of twitching turning into cramps

When is your appointment?
 
Re: Month of twitching turning into cramps

Due to my being on welfare, the state is going to have to approve or deny my request to see a neuro. My doctor sees primarily medi-cal patients and advised me to appeal it if I am denied. So right now I don't know when the appt will be =[
 
Re: Month of twitching turning into cramps

Does anyone have any new thoughts on my symptoms? Does it still not sound like ALS? I was told here that the fact that I am experiencing symptoms in my legs AND tongue/throat that it points away from ALS and that the 'feeling of tiredness' in my tongue is a good sign because ALS is about 'failing and not feeling'.
 
Re: Month of twitching turning into cramps

Beky please would you be so kind to merge this into his other threads?

wesker answer = NO
 
Likely my last post here.

Hello everyone. I think this will be my last post in this forum. A couple days ago I woke up out of breath and by mid day I was having stabbing chest pains and racing heart. Called 911 and they ran a number of tests. EKG, CT, Blood test. The EKG was SLIGHTLY abnormal and CT showed an abnormality in one of my heart valves, also they found an enlarged liver (I don't drink or do drugs legal or illegal), as well as a nodule in my right lung. So the reason why I think this will be my last post is because although the neurological symptoms are still there (theyve gotten better) I don't think at all that it is ALS at this point. The enlarged liver does say something about a possible auto-immune disorder like MS which would better explain my neurological symptoms than ALS. But ALS is out of my book for now which means I should not ask for any more of you wonderful people's time. From the bottom of my heart thank you all for being my rock of foundation while I waited for appointments. Each and everyone one of you PALS and CALS that take your time to reassure people like me are angels from above. Bless you

-Mike
 
Re: Likely my last post here.

Good luck, Mike.
 
Re: Likely my last post here.

Thank God you dont have ALS, whatever else you have can hopefully be treated, godspeed
 
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