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I'm a 26yo male and I've recently had a lot of distress with symptoms and am worried it could be ALS. I'm curious if anyone here can share their opinion. The order of the symptoms is:

1. Tinnitus (Ringing in the ears) - Started 3 Months Ago - Getting Worse - Constant
2. Buzzing/Tingling in the Hands and Feet - Started 1.5 Months Ago - Getting Worse, But Comes and goes
3. Cramps in legs, muscles twitching in calves, muscles also twitching in neck - Started 1 Week Ago - Getting Progressively Worse (Cramp pain/twitching is now constant).

I have been to the doctor through all of this, originally he put me through the tests for Thyroid problems and then brain cancers. Everything came back fine, along with vitamin intake.

Today I went to see him about the cramps and he also noticed that my tongue is spasming uncontrollably (or fasiculation as he called it). He has referred me to a Neurologist and I have set up an appointment for next week.... But he seemed hesitant to tell me what it may be. After reading about my symptoms, I've convinced myself it may be ALS.... Do these symptoms sound like ALS? Or am I worrying about nothing?
 

Alyoop

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Your Doctor probably has no idea what your problem might be, hence his referral to a specialist. Try not to read anything into his response.

You have a very short wait for your referral, so you are extremely lucky. Best to stop researching on the Internet. It tells a very very small part of the story!

Just hang in there and keep busy. Less time to ponder on rare terminal illnesses, so early on in the diagnostic process.
 

Toto's Dorothy

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Worried,

My first suggestion would be is to turn off the computer and wait for your a ppoint ment. Its only a week away.

Since you will probably ignore my first one, then PLEASE read the stickies that my PALS wrote. It may calm you down as you have stated that you have self di ag nosed yourself with ALS.

As for your doc tor, he is doing exactly what a GP is supposed to do. Examine, evaluate and refer. And like Aly said, he probably doesn't know what's wrong. Also, I would think poorly of any doc tor that would throw names of di seases out there without any test re sults. Again, your a ppoint is only a week away. Relax.

I'm not a doc tor, and of course this is only my opinion, having said that, NO, your symp toms do not sound like mine. And be honest with yourself, is the worrying getting you anywbere? Worrying can exacerbate the symp toms you are experiencing. Again, RELAX.
Good luck to you,
 

notme

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I made the mistake of 'reading' the letter the neurosurgeon wrote to the referring neurologist. I spent weeks in panic mode. At this point--there are a LOT of possibilities.

Ringing in the ears and the buzzing aren't classic ALS symptoms at all--so hold out and wait and see what is going on. There could very well be a benign cause for you issues--try to get out and enjoy yourself.

I know that might sound condescending, but the more you look--believe me--the more you'll 'find' even if you don't mean to. You have ONE of many possible early signs of ALS--as does the majority of the population at some point or another. It's when several of them are combined that folks need to worry.

That one sign is 'cramps' in legs--and that is the one sign that the majority of people experience for some reason or another--things from neuropathies, over-exertion, low potassium levels, stress, B-12 absorption (Levels aren't enough--they have to see if it's being absorbed) My 'levels' are borderline--but my absorption is nil)

Try not to worry until and unless you are given reason to. You've done the responsible thing by going to your GP and he's done the responsible thing by forwarding you along to a specialist as he deemed necessary-- or perhaps even as a precaution.

Good luck to you.
 
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Thanks for the responses all.

I have a question about progression, is it normal for symptoms to show up very rapidly? In the few days since my first post I have developed the following symptoms:

1. One muscle on the lower side of my face feels very numb.
2. My pinky finger on my left hand is curled inwards. When I try to straighten it, my finger shakes and 'positions itself' back in the curled position. This makes it very difficult to type.
3. I now have knee pain.

My appointment is 2 days away, but this quick development of symptoms has me very worried. Is this too fast to be ALS?
 

panguinjen

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You only have to wait 2 days to see a specialist... The good people on here have given you some good advice! Step away from the in ter net and calm down. My pALS does not have your symptoms nor at that speed.

Wishing you peace,
Jen
 

sadiemae

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No it is not normal for ALS. to progress that fast. My husband had bad leg cramps, and no other symptoms for over a year. He never went to the doctor for the cramps. So was it the beginning, who knows. See what the doctor says. Ask him about BFS.
 

Toto's Dorothy

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Worried,

Your a ppointment with the doc tor is less than 2 days away. 2 days is NOT going to make a difference. Believe me (and I'm saying this, NOT that I think you have ALS, far from it). And I believe I mentioned in your other thread, that anxiety can and does exacerbate your symp toms my suggestion to you is this: Take notes, starting now. Write down what you are feeling. Tomorrow upon rising, listen to your body and write down what symp toms you are exper iencing. Same goes for noon time, dinner and again at bedtime. Also, write down how you are feeling, ie. Tired, weak, sad, anxious, et cetera. Be honest. Take this paper as well as one with your questions on it. Be honest with your doc tor and listen to what he has to say. It would be beneficial if you had someone go with you !

Good Luck on Thursday,
 
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Worried

So far your story sounds nothing like Al's. Sensory findings are a good thing if your worried about Al's. Most of the pain/discomfort that comes with Al's is from cramping ,muscle fatigue and other symptoms that stem from muscle death. Numbness and tingling are highly suggestive of another cause.

Speed of progression is variable, but it is without question not a disease that progresses throughout the body in a matter of days. Ever.

Could you have bfs? Maybe. Could it be something else? Maybe. Could it be Al's? very very unlikely. Almost as unlikely as someone in the general population developing it.

What should you do? Go to your neuro appt. be honost and straightforward but keep a handle on your anxiety. Not only will this help you feel better but it will help your neurologist get to the bottom of anything that might be going on. My advice may be easier said than done but it is your best and really your only constructive option.
 
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So I took the advice and tried to calm down and pull away from looking up symptoms online until after my appointment. The appointment was today and he noted the twitching in the legs, and also fast reflexes and tight muscles... He has scheduled me for future EMGs and MRI's but said it's possible my symptoms were due to anxiety. Him noticing the fast reflexes did not help, as I now see those are also a symptom of ALS :( .

From experience does anyone know whether they will know whether EMG is abnormal while they are performing it? Or will there be another long waiting period?
 

Toto's Dorothy

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Worried,

If your doc tor is performing the EMG himself, and most do, he will go over the results with you after he has completed it. And since you have already used Doc ttor og gl e, try typing in young people with br isk re fle xes, it brings you to several sit es. One in particular. Out of Toronto, Canada. Its not uncommon for young people, especially those with an xi ety to have br isk re flex es. Also mentions B F S. Have you checked out A bout B F S, yet? Or did you read the stickie by Aly(oop)? Or the thread about by Sadiemae, titled ALS or B F S? I highly recommend them.

Good luck to you,
 
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EMG and MRI came back clean, but the doctor said he wanted to see me in a few weeks because my facsiculations were so constant (they are all over my calves and thighs with one occurring every half second or less). He also noted facsiculations on my tongue...

He would not say whether he though I had ALS or not, which isn't too comforting. Do you know if it's possible to have facsiculations with a clean EMG but still later be diagnosed with ALS?

And if this were BFS. Is it normal for BFS to affect muscles 24/7 with no change in facsiculations? And also present muscle aches, spasm, cramps and stiffness?
 

Anja

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Never ever trust Google.... ad focus on all other causes....
 

Toto's Dorothy

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Worried,

You should have asked your doc tor those ques tions. That is what you are paying him for. Check out the si te A bout B F S. They have it set up where you can ask ques tions and get immed iate re spon ses.
 
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I asked my doctor but he said it could only be completely ruled out by monitoring the symptoms over time. Which isn't too comforting of a thing to hear when no data is given on ALS/Fasciculations/EMG corelations :(
 
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