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quiksilver

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I have been reading posts on this site for the past week...I think it is so amazing the support everyone gives and receives. I think it is my turn to be the new member now. Had twitches for past 2-3 years...never any weakness...just normal twitches all over body. About two years ago my right arm/leg would go numb while I was sleeping...like it was alseep itself. I would wake up and get the blood flowing and all would be fine. We to neurologist who noted a slight weakness in my right hand strength. Did an EMG on hand, arm and leg...came back normal minus little carpal tunnel. NO ALS was the neuro's verdict. Clean MRI at the time also. Went on with my life, strength fully returned and I have felt good ever since. Little fatigued / foggy headedness, but nothing major. Last week I caught myself having to over pronounce the "6"'s in my phone number so that they were clear. In addition I noticed that my voice became hoarse after talking for an extended period. Four days ago I noticed that my speech was not right...Something between mind, tongue and lips was not clicking quite right. My tongue also feels thick and I feel like I need to drink tons of water. I am not sure if other people can tell, but I know that something is not right with my speech. I have examined my tongue up and down...it sticks out straight and has NO and I mean NO fascilations. It just sits still in my mouth. No atrophy either. I am a big talker and never have to think about talking! Guess this sounds familar to many of you right? I am of course scared to death. Only 29 (male) and married one month ago. Two months ago I was running 2 miles a day and getting better with each run (until I got married and instantly became less concerned about my weight :) My wife has been out of town all week and she knows nothing about this. She is the most incredible person and the thought of not getting old with her rips my heart out. I think you all know the feeling. She is my everything.

My question is...speech problems usually seals the deal on this one right? I have not seen any people with symptoms like mine (funny speech) post good news after trips to clinics etc. Can someone shoot straight with me? Do people just not return to Forum after getting all clean verdict from clinic? I have to speak with my wife this weekend about this or I will go crazy.
 

quiksilver

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And I promise...

I promise I will see this one through and post every step of the journey on this site!
Looking at pictures of my wife just makes me want to cry. Any reply will be soooo helpful as I am hanging on a cliff at the moment.
 

Al

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First of all, don't panic. You've noticed the speech changes, but has anyone mentioned it?. Have you got a tape recorder? Make a tape reading the paper or a book. Does it sound slurred or raspy? Raspy could be a sinus thing. Have someone else listen to the tape. Our mind plays tricks and you may thinkyou hear something that isn't there. Speech problems can be caused by other things besides ALS. Don't count yourself out yet.

AL.
 

quiksilver

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Thank you for the response

First of all let me say how much I appreciate you responding to my post.

I taped myself this morning and there is not alot of difference. The issue is that when I start talking I feel my tongue get tied as if it is not getting the right signal from my brain. the coordination is just not there...I have to really annunciate carefully and slow down a bit. I really do feel for everyone who not only has ALS, but also those who truly convince themselves that they do. I am a grown man (29) and have been clutching a teddybear the last three nights praying that I wake up and my speech is back to normal.

Seems to me my speech is slurred...Wouldn't facislations be present along with the slurring of words? I would think that the reason ALS patients slur their words is because the muscles in their tongue are weak.
 

quiksilver

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Raspy is not the problem

Raspy is not the problem. More like miscommunication between upstairs and my tongue / mouth.
 

BethU

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Hi, Quiksilver ... I hope it's not ALS and it doesn't sound to me like it is. If there is something happening with your speech there are a lot of other things (treatable!) that it could be. And if you're really slurring, other people should notice it.

And no ... speech problems don't seal the deal with ALS. In fact, only a minority of patients start out with "bulbar" symptoms like speech. It usually takes years before the speech is affected in most ALS patients.

Also, bulbar onset usually occurs in older people ... past 60 ... not younger.

If it continues, you'll want to check it out, but it is really, really, really unlikely that a young guy like you would develop bulbar onset.

Hang in there.
 

hopingforcure

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You would have tongue atrophy, if you had speech problems.. Relax, twitching can go along with cramping, and the tongue is just like any other muscle, can get crampy and achey.. Relax.. I am betting you will be fine...
 

Bailey

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Hi Quicksilver

I well know how you feel I had speech problems months before I was diagnosed. But it always returned after a short amount of time. I had more trouble with my hands, arms and legs. And bad twitching. I was finally diagnosed in September 2008. My symptoms are rapidly progressive and everyday seems to be a new challenge for me. But Get to a dr and get diagnosed. You may be on the wrong road and not a very long journey. Good luck

Bailey
 

John1

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Hi QS,

No, speech problems do not seal the deal. They may have many causes other than ALS.

Not to scare you but you wanted frankness. My first symptom was also tripping over my words. I still remember the day in 1994 when I had difficulty with "lily". I was in my mid-forties. It progressed very slowly from there and most people told me I had no speech problem although I knew I did. I made the rounds of neurologists for a few years and the speech grew erratically worse and I developed swallowing problems as well. I had two "clean" emgs. ALS was ruled out and they focused on myesthenia gravis. This is fairly easily tested for and curable. Finally I went to one of Canada's principal neurology hospitals where they did recognize, through another EMG, that I did have ALS. By then I had developed some weakness in my legs as well.

Oddly, I can still speak fairly clearly (it varies over time) and my swallowing has actually improved. Contrary to one poster's assertion, despite speech problems, I don't have any atrophy, cramping or fasciculations in my tongue. In contrast though, my major muscles have lost function at a fairly consistent rate. I can longer walk and have used a scooter for about 4 years. I am losing hand strength now as well.

You can take some solace in the fact that if you have had ALS symptoms for 2-3 years and have no noticeable major muscle weakness, then you are almost certainly a slow progressor. If you do have ALS you should have many quite normal years ahead of you. And who knows, with GWB on the way out and the ban on federal support for stem cell research along with him, there may well be a cure in 8-10 years. Meantime enjoy loving your wife.

I would recommend that you get yourself to a hospital that specializes in ALS diagnoses. The average neurologist knows little about it and you can waste lots of time making the rounds with them. I did.
 

quiksilver

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Thank you

Thank you everyone for taking the time to respond to my post. I guess the verdict is split based on y'alls feedback. :) I will see how things go and if im not doing better in a few weeks I will get myself the dreaded appt. OUt of my hands at this point and into a higher power's hands.

Just curious...how old are you John? How old were you when you first noticied the speech problems?
 

John1

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QS, I had just turned 48 when speech problems began. I am 62 now. BTW, I'm not giving a verdict on your situation. I have no idea if you have ALS or not. I am only recounting my experience. There are some similarities between the two of us but that is one of the reasons that ALS is difficult to diagnose. Its symptoms mimic many other, and more tractable, diseases.
 
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