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Kiggle

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I'm sorry to burden you all!

But I'm a 24 year old male, average height (5 foot 9), pretty overweight (220 lbs)... been feeling muscle twitching mostly in the upper part of both legs (about 5 inches above the knee), and sometimes also in the calves and upper arms. The twitching is getting worse, sometimes lasting for 5-10 mins at a time. Sometimes dull, sometimes violent and accompanied with cramping (the muscle kind of holds for a while, then releases). Also feeling a burning sensation that is also felt with general weakness in upper arms and shoulders area. If I hold the remote control for even a minute my arms start to burn and feel weak... or if I hold the phone, or whatever object. I just feel a general weakness, sometimes present even if I'm using muscles much (like typing right now), or not using them at all... often in my legs too (SO weak after taking puppy for walks)...I wouldn't think ALS if the two (twitching AND weakness) didn't occur together...

I've gone to the Clinic twice. Twice I was told not really a full sign of ALS. My reflexes, posture, balance, and muscle strength were checked...

what brought me to read up on ALS was the fist doc's first question after telling of symptons, which was, "does ALS run in your family" - I said NO, and forgot about it... until the next day when it was nagging at me as to what exactly ALS is... then of course I come across the dreaded statistic that ALS occurs sporadically the majority of the time. I know she was implying that to have those symptoms related to ALS at a young age was most likely related to genetics... but now going over this forum, seeing ALS near-common in men in their 20's... IT'S REALLY, REALLY frightening...

i feel horrible because there are those who have actually been diagnose with this diease in their young adult lives... here I am just fretting...

BUT my problems are getting progressively worse... the twitching more incessant and the muscle weakness more apparent...

what is the likelyhood of ALS based on what I've described, and also just generally based on my age (24)?

THANKS so much. and god bless all of you.
 

MarieOC

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Hi Kiggle,

No one can diagnose you on line. If you are not feeling fully informed/satisfied with the results the clinic gave you; I suggest you find a way to get to a qualified neurologist and speak to him/her about your symptoms.

A neurologist will be able to tell you what is going on with your body; after you go through the entire range of tests. While the forums are a great source of information; they are no substitute for medical testing. I know waiting for more tests just makes the worrying worse; but really it's in your best interests to be diagnosed before you go all haywire convincing yourself you have ALS.

I wish you all the best.
 

Kiggle

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oh i understand that. I just thought that maybe somebody could tell me if that sounds like possibly ALS. It's the "Do I Have ALS? Is This ALS?" section haha. Anyway, thanks a lot! Kinda freakin' out, though!
 

CindyM

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My story might be able to put your mind at ease. When I went to the ALS clinic they said I do have a neuro-muscular disease, but my symptoms are too mild and too slow-progressing to pinpoint. This doctor sees hundreds of ALS patients, and he says every year about 5 or 6 of them are folks with a lot of symptoms, and even some ab-normal tests, but no clear disease ever develops.

This spring will make 3 years since I started having weakness and everything else. I still work a full time job, drive, walk without assistance, and live a full life.

My advice is to get evaluated at a neurological clinic associated with a major teaching hospital, just in case you need treatment. (There are many diseases that mimic ALS, and some of them respond to treatment.)

My next advice is to find ways to occupy your mind while you are waiting for answers. This is most important, because in my experience it may take more than a few months to determine whether or not your symptoms will become totally debilitating, and if you spend those months in fear, that is a long time of your life, time that you will never get back.

Hope this helps. You are not able to PM me just yet, but if you are still concerned, leave a message on my visitor page and I will respond right away. Cordially, Cindy
 

wright

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That was incredibly irresponsible for your GP to even bring-up ALS with the symptoms you have. They are much too vague and could point to a gazillion other things, most of which are completely treatable. That would be like suggesting someone had a brain tumor if they presented with a headache. I don't know how attached you are to your GP, but I would look for another one given the scenario you just painted.

Did he talk at all about a diabetic neuropathy? You say you are overweight, which puts you at risk for Type 2 diabetes. Your symptoms (especially the burning sensations) could point to that.

Get referred to a specialist and get some blood work done along with other needed tests that your physician will give you to get to the bottom of your problem.
 

Kiggle

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Oh, it wasn't my GP, it was a random doc at the clinic. Speaking of my GP, I actually saw him at the clinic today... he said that I'm not showing any signs of "muscle wasting", or any signs that my muscles have decreased in strength - and of course my muscle twitching wasn't there when I saw him (it was there in the waiting room, though...) - but anyway, he's still recommending me to see the neurologist , who I prob won't get to see 'til like April-May, which really sucks!

anyway. He said that it's a rather rare occurance to get it at my age, but that doesn't mean it's impossible - so to put my mind at ease, might as well see a neurologist. Well, I hope things don't get progressively worse.

I've seen like 3 doc's in the past 2 weeks, 2 who flat out said that they don't think I have it. But how, how can they say this w/o ordering tests and such first? Is it really that easy to spot (based on reflexes, muscle strength, balance etc.?). And really, to get a real feel for the statistics, is it REALLY rare to get it in your early-mid 20's like I've been told by these doc's, or is that just a way of them easing my mind?

I'm sorry to those who actually have been diagnosed, or who are in the process. This seems selfish to whine and be uber-neurotic like this... but it's so scary... the twitching, it won't stop... even in the feet now! (common sign?)... and my shoulder + back muscles feel so sore and weak...

Thank you all so much.
 

Kiggle

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oh and also, I've had a CT and MRI + blood work in the past year. All fine. Hence my further worrying that maybe it's something like ALS. Oh, this is so neurotic... If only that doctor hadn't asked me if ALS runs in the fam...
 

Kiggle

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So sorry for yet another question! (where's the "edit" button?)

but is it common for a 24 yo male to get twitches and then 4 months later suddenly feel weakness in shoulders & legs? does it occur that quickly at this age?

also, I used to get the worst eye twitches... last summer, everyday for about 2 months... thought it was just stress...

anyway, that's it for me today. sorry for the obsessive nature of these posts. any more help/answers would be so appreciated you don't even understand. god bless you all.
 

planningguy

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Kiggle,

Sorry about the symptoms you are suffering, hopefully a trip to the neuro will get you a few more answers. I agree the GP mentioning ALS out of the blue like that wasn't a shining moment. As someone who is undiagnosed with anything as of yet, but with some progressive symptoms, I know the road can be a little confusing and frustrating. Still I take heart that after 8 months my neuro has only mentioned ALS once by example, and then followed up with saying he didn't think I had it based on clinical exams and diagnostic tests.

Sometimes I think we almost assume that specialties in medicine are like talking to a Ford mechanic about a Toyota, when its more akin to talking to the roofer about the plumbing. It has been fascinating to watch different professionals comment on each other’s notes and thought process. I've been fortunate in that each one was careful to explain where the limits of their expertise were.

Your questions about progression can't really be answered because you haven't diagnosed with anything. There are dozens of illness and conditions that cause perceived weakness and muscle twitching. Hopefully the neuro or other dr. will help you walk through some of the more common possibilities.

ALS is very rare (remember it is a rare disease to start with) in someone your age. There was a thread not too long ago that pointed out that while a number of active undiagnosed posters on this site were in their 30's (I'm one, though early 30's thank you very much ;) ), most of those that were actually diagnosed with ALS were much older (40's, 50's, and older). Many initially assumed their symptoms were part of the aging process, or related to another condition.

I enjoyed your comment about this being "neurotic," and would add a piece of advice before you get in too deep (something I should have done myself). The mind is a powerful thing, and in reading these forums there have been countless cases were someone has asked, "Is ALS like X." to which the response has been, "No, its more like Y." So many times within a week or two the poster will be back saying, "Oh my gosh now Y is [email protected]!," even when Y doesn't happen until the later stages of the disease.

So with that, try not to scour the web and ask Dr. Google about ALS symptoms. Not only is a lot of the information suspect, but you'll only bring yourself one step closer to the brink of madness.

Sorry for running long... and welcome,

Robert
 

CindyM

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Since there are no tests for ALS, and it is a DX that must be made after ruling out everything else and after the individual has reached a certain level of debilitation, the real question becomes how to spend your time while waiting.

Back before Aracept was on the market, my Mom started having trouble forgetting things. Diagnosing Alzheimer's is similar to diagnosing ALS: you have to rule out common things and wait to see if the symptoms get really bad. Eventually brain damage shows up on tests. But it takes months and years before the doc can say with confidence that it is AZ.

So how should my Mom have spent her last years of independence in sunny Florida? Worrying about what her future may hold and wondering when the other shoe would drop, so to speak?

Not my Mom: she prepared for the worst, then went off to the beach and enjoyed her life. When the DX finally came, she put her plan into operation. My Mom taught me a lot. If I were near a beach today, I'd go for a swim, LOL!
 

Kiggle

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God Bless Your Mom.

But really, if in 4-5-6 months, the neuro says, "Boy, I don't think this is ALS" - should I just take that as the Final Word, and move on?

Also, do my symptoms scream, "ALS!" .

And at my age, will the progression *most likely* be a slower one?

I feel as if I'm literally going insane. The clinic 4 times in two weeks. I'm thinking of going to emerg. at my hospital tonight for another opinion. Waiting nearly a half a year to see a neuro is gonna kill me.

I notice myself choking at night, I don't swallow properly. Happening for past few weeks, didn't think anything of it 'til now... swallowing is phlegmy + lumpy, passed that off a year ago as just too much stuff running down from nose.

Ugh. this is ridiculous. I'll just have to wait it out.
 

Kiggle

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and does the tongue on the sides look ripply? like wavy? the left side of my tongue looks kind of deformed, like ripply side to it... like little chunks were bitten out of it or something...

oh, this is just CRAZY. I'm sorry. I feel ridiculous, but I guess this is the place to come for some answers or opinions, right.

I'm not the only person in the world, I need to keep reminding myself that... but this is so crazy, I cannot stop thinking about it, and wanting answers I probably cannot get 'til I see the Neuro.
 

CindyM

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I cannot stop thinking about it, and wanting answers I probably cannot get 'til I see the Neuro.

You are right that answers can only come from a face-to-face visit with a doctor. If you really need help stopping thinking about this, tell your GP how you are feeling and ask him for some medication to help settle you down. Meanwhile, get off the computer and go enjoy whatever hobbies you like best.

The ridges and even scallops in the tongue are normal for a lot of us. Again, no big deal. So: what hobby will you now take up? :D
 

Zaphoon

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Kiggle,

There isn't a doctor around that would dare diagnose you with a neuro disorder without first doing a large battery of tests and letting time tell the tale as well.

You might as well rid yourself of your anxiety as it is having an adverse effect on those who must live with you.

I would suggest getting a copy of "THE SOUND OF MUSIC" and watch it over and over until you've memorized every song in it (particularly "My Favorite Things") and then you won't feel, so, bad!

Zaphoon
 

Kiggle

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Thanks, Guys. I know that I just need to wait it out, like the rest...

In the meantime, lots of walking, and looking at getting a 'script for lowest dosage of Celexa. Hopefully that'll help ease things a bit.

But a question... can excessively drinking 10% Beer, like I mean, 3-4 Tall cans a night, 4 nights a week, over 2 years, maybe cause this? (not as in ALS, but these symptoms) - that stuff was like gasoline + lead combined... yes, I had a strong bout with drinking... I'd often drink myself into the spins, but NEVER puked... I held it ALL in... night after night after night... with this same beer... I'm sure my body holding in all those toxins can't be good, especially over 2 years... I stopped drinking that crap last summer... I vow never to drink it again, or drink in that manner again. It was totally consuming me.

Also, I've been in quite a few heavy fist fights (always while drunk), with me (being pretty short, or just average height anyway) usually on the receiving end. Many a brutal blow to the head (my thing was to walk into punches to prove how "tough" I was - great drunk (ir)rationalization... anyway, I've been KO'd twice since I was 21... and received too too many to the head in the long run.

maybe these two factors combined, along with my depression, are to blame... but why the clean MRI, the clean CT, the clean blood work?

I'm dumping this all out like anybody should really care... that's the last of this, just had to finalize my thoughts.

thanks so much for listening. more feedback is always appreciated.

my hobby? LOTS of walking. I love it. And I need to lose this spare tire I've developed over the past 3 years... significantly less drink, significantly more walk.

Peace!
 
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