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Cpalmer

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Hey guys the name is Carson I'm 27 male I'll be 28 on Halloween this year and I'm from Phoenix Arizona and I've been dealing with some things that have concerned me. Started off with body wide twitching been going for 10 months straight now and shortness of breath which I noticed more when standing in chest deep water and then just started noticing it when in bed on my back. I didn't even know what twitching really was until it started happening to me. I have seen a neurologist but now am being referred to a neuro muscular specialist. The regular neurologist clinical exams are looking good no atrophy hyperflexia or any other signs EMG didn't notice any abnormalities. The past month now I've noticed it being hard to keep my head held up without my hand and I can hardly do anything without my arms cramping and tiring out like my muscle endurance is gone I'll pick something up and have to drop it because it will just get do tired and I have cramping in various muscles. I read that in respiratory onset the first symptoms noticed are body wide twitching head drop short of breath and tired limbs that's what I've read from research.net I've also read that this is a rare presentation like 3 % or something. Anyways I see the specialist in a few weeks but what do you all think? Also is there warning before the head drops pain or fatigue in the neck anything thanks in advance for you're time I'm beyond terrified
 
"EMG didn't notice any abnormalities"

That's kind of significant. Perhaps there is some other explanation for your neck problem.

"is there warning before the head drops?"

No. ALS doesn't hurt, feel weak, or feel weird. Just the muscle will not work, and lays limp.
Also, you described your muscles feeling tired before they fail. Nope. Something going on there, but I wouldn't call it ALS.

ALS is a disease in the brain that destroys motor neurons that are connected to voluntary muscles. It destroys those nerves one-by-one in serial fashion over a period of months or years.

When ALS destroys a nerve in your brain, that nerve cannot send a "go" signal to its corresponding muscle, so that muscle doesn't contract, ever again. It never gets better. The muscle just lays there, limp, paralyzed. There's no feeling associated with the process.

Hope that helps.
 
Thank you and that does help does it matter if the emg was done only in leg and calf? Would it still pick it up and regarding my breathing I've had a PFT done and but it wasn't performed while on my back which I thought they were suppose to do if they suspect respiratory weakness
 
Would the my pick it up if it started in my neck or breathing muscles
 
Sorry I meant would the emg pick it up still? I'm pretty confused though some people have Said they noticed fatigue or cramps first while others just classic weakness why is that is it just different in everyone?
 
Carson, it can different in everyone, but the flip side of that is that there are other, more common conditions out there that could have caused your symptoms. Don't leap into ALS right now. Your EMG seems to have ruled out ALS. And you didn't mention what the neurologist said, so I gather he didn't see ALS.

So I wouldn't worry about ALS while you're waiting for your next appointment. Keep looking.
 
Hey Carson
You do sound quite anxious. I don't blame you, you are very young to have major issues.
Can I just say, whilst you are still in the early diagnostic stage, the Internet is not your friend.
You will scare yourself stupid looking, trust your doctors.
All the best to you and your doctor.
 
Yea your right about the internet so much information is on there.. I messaged the respriatory specialist and the respiratory therapist messaged me back and told me the pft they did, did test for respiratory muscle weakness and I didn't have any but from what I've read online they are suppose to test you on your back also is that true?
 
Some people with ALS are tested standing and supine. You would have to ask a doctor if it is needed in your case for diagnosis or to establish a baseline.

In our case, the clinical exam and EMG were all that was needed to establish ALS. The MRIs were done pro forma. Although we went to a lot of doctors for a lot of tests, I think it was all pretty much just to give the doctors some familiarity with the disease, because there was nothing that could be done for treatment or cure.

Carson, for the next few weeks until you have your appointment, you have the choice of focusing on dying or focusing on finding out the more common (nonfatal) conditions that might cause your symptoms. Your choice.

Frankly, I personally would go to another city if needed and pay cash if needed to get a quicker appointment with a qualified specialist. But that's just me.
 
I know I'm trying not to focus on this but it's so hard.... Isn't it a good thing that I'm not showing any signs on physical exam? Do you know of anything else that could mimic als and cause my symptoms? Thank you so much
 
I guess I was hoping for the you don't have als response that most folks get here I'm sorry this is just a very difficult time waiting on the call to see when I can see the specialist
 
How many pals here are in their 20s does any one know?
 
Nearly none. I have seen a database of 1800 people with ALS. You'd be the youngest if you had it.
 
This question arises frequently so I have attached the histogram from the US Registry's first ms on the epidemiology of ALS. Younger age=less likely but a non-zero probability.
 

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Cpalmer has too many usernames. It's against our rules to login here under more than one username. Banned. Again.

When people are asked to leave because we've given all the answers we can, and then they log in again pretending to be someone else, it takes a bunch of time away from the people who really need it.
 
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