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RR15

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My tongue seems to have a slight white look to it, almost like a soft, subtle white coat. Nothing major but it seems different. Among other signs, can this a sign of ALS?

Also, I am conflicted about the tongue "twiches". I have heard some say that is a sign of ALS and I heard Wright post "Many times you will also hear that tongue twitches are more indicative of ALS and that is complete BS" which really lifted my spirits beyond belief as sometimes, not always, I see a slight tremble in my tongue. It scares me to death. I know there are very brave people on this forum, I just don't consider myself really one of them. I am a major chicken!

Can anyone answer these questions and thank you very much for listening.
 

RR15

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neck

My neck seems to have swelling around the colar bone area on both sides. It is strange. It seems new and is softer in those areas - seems fatty almost. I am a slim person - 6 ft 160 lbs, so this seems different. Does ALS cause this? I am very scared.

For months, I have had slight twitching in my legs and sometimes in the arms, tight muscles, especially in the legs, what seems to be muscle softening - I don't know if this is atrophy? I lift weights occasionally try to "prove" to myself I don't have ALS. I dont feel weak but I just haven't felt like myself for several months. I just want to feel like myself again and simply live.

Thank you very much for listening to me.
 

Zaphoon

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RR15,

It is my understanding that ALS usually doesn't present itself with fasciculations or twitches. Weakness is usually the hallmark of early signs of the disease. Oh, there are other things like hyper active reflexes, babinski sign and so forth but one of the biggest distinctions with ALS is muscle atrophy.

Odds are greatly in your favor that you do not have ALS, even though you twitch. If you are really concerned, set an appt with your GP. A good GP can usually distinguish if a referral is needed for a neurologist. Believe me, if you lift weights and have no ill effects (and you would if you had a motor neuron disease), its probably not ALS. See a GP.

Zaphoon
 

planningguy

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RR15,

I read back over your last few posts before responding to this one. I'm curious what your dr.'s have said. You haven't really indicated. You mention swelling and joint pain early on. I was wondering like awieleba in your other post, if you've been to see a rheumatologist yet?

More specifically to this thread, with the eternal preface that I'm no doc and cannot diagnose you, tongue discoloration and mucus coating can occur for a lot of reasons.. and can even be stress related. From eveything I've ever read, many people who think they have tongue fasiculations are actually seeing their tongues natural tremor (which can occur with an unprotruded resting tongue). Even some of the medical information I've seen on neurologial exams warns doctors not to "overcall" tongue fasiculations. As you mention, Wright, who was reassuring me in your quote :), has commented that tongue fasiculation is not a presenting symptom of ALS.

Robert
 

CindyM

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I've given up examining my body. There is just no percentage in it. I find it a total waste of my time, since what I think is important never concerns the doctors and what they notice, like my twitching, hardly concerns me. :smile:
 

RR15

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I have been to two different neurologists and they have given me exams, all sorts of blood work, an MRI on my brain - everything is clear according to them. They keep wanting to call it stress but I know my body and this is "something". I know it is not stress. I haven't had an EMG as I am a full chicken of that test. I suppose I should take it but ALS is not a disease where if you catch early on, you will have a good chance to beat so it keeps me away.

I will go back to my GP and ask her if I can see a rheumatologist I suppose.

Anyone can chime in about the neck? It seems I have developed two soft pockets around the colar bone - almost symmetrical. Just as if it is swollen or soft, fatty tissue - really odd to me.

Thank you.
 

awieleba

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I think you have lymph nodes there. Ask your gp to see and feel and keep an eye on them for growing. I have a swollen node under my chin for 6 months that I know, it has not gotten bigger so the doc is ok with it at this point. I dont *think* this has any thing to do with als.

when I was first sick and my White blood cells were abnormally low my doc felt all around my neck AND collarbone.
 

Zaphoon

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I don't think the neuros would dare diagnose NMD without doing an EMG and that test is no big deal. The needle they use (single needle) is small and doesn't hurt, just stings a bit. Small children have to put up with far worse with some of the dystrophies and such.

Your neck, well, there isn't much about ALS that is symmetrical. What have the docs said about it?

I cannot understand why you are against getting an EMG. You feel a little prick and thats it. Allow the neuros to use all of the tools at their disposal. Its the only sure way to get to an accurate diagnosis.

Zaphoon
 

planningguy

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RR15,

I would echo Zaphoon. If you haven't had the EMG yet, then I would encourage it. Keep in mind an EMG is not an "ALS test", it is a neurological diagnostic tool. There are a number of other things that could be tested via an EMG, and having just had one done not too long ago I would agree that it is not as dramatic as it sounds. For me it was just some discomfort, and a slight "cramp-like" feeling.

Still, the swollen or "fatty" tissue around the collarbone, plus the initial symtpoms you posted on just sound like you might want to pursue a different parallel track...

Robert
 
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RR15

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Thank you for replying to my questions. I truelly appreciate it.

I am not afraid of needles in my body - I actually have a high tolerance for pain. I just feel that the day I go in and take an EMG will be the day the doctor tells me I have ALS. That is the primary reason why I haven't taken that test. I know that doesnt sound very brave, but this disease seems so cruel that it makes me that scared.
 

Al

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Give your head a shake boy. You don't want an EMG because the doc MIGHT tell you that you have ALS? Then why are you hanging around here asking questions that if you used the search feature you'd see someone has asked a dozen times before? Are you hoping we'll all say yup you got it you're going to die? Why believe us? We're not doctors. You don't believe them and they went to med school. You don't want this. There must be something better to do in LA than sitting around thinking you have a disease you DON'T have.

AL.
 

Sammantha

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White tongue

First of all i have NOT been diagnosed with ALS.... I do however have a problem with dry mouth and wake with it. If it gets really dry i develop thrush. Not really bad nasty thrush but like what you wrote your tongue to look like..... I have had an AIDS test and immune tests galore because it is not something people get for no reason. By the way i do not have AIDS or an immune disorder. Your general practitioner can tell if your tongue is white due to dryness or if you have developed thrush. Get it checked out, best of luck Sammantha
 

RR15

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yes, there is something in LA that I do other than worry about ALS, such as when I am not working 40 hours a week just simply to afford to live near my family, I spend my off time helping homeless in downtown LA find work/shelter, helping to feed the poor at the Lawndale soup kitchen, helping to clean up the beach like this weekend for Heal the Bay.

At the same time, I am simply trying to find support/answers to just what the heck has come over my health in the past 6 months.....ie, shaking muscles, loss of breath, atrophy, lethargy. This in the face of someone who has deliberabately eaten well and exercised just as the doctors recommend all my life. Sorry I was born a chicken shit with a good heart.
 

Al

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So like I said, get the EMG. Find out you don't have ALS. See an autoimmune or Reumatologist and get on with your life.

AL.
 

happy

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RR15,
I want to relate to you what happened to me while I was experiencing very bad symptoms for about a year...IT WAS MORE IN MY HEAD....I even had my neuro's convinced. I had been looking and FEELING every single little thing that it all blew up. I was feeling short of breath, weak , twitchy, sick, dying...oh my gosh it was terrible. Then, when I went to the second neuro, because I had the first one baffeled. First thing he said was based on your symptoms, it sounds like you have Lou Gerhigs disease. Then after the exam he told me that clinically it doesnt line up...get the emg. I did and it ruled it out. After I had it and i knew I was not going to die of als....my symptoms went away. Does my mind still want to convience me that the dr doesnt know what hes talking about because my symptoms line up with those on the als forum so therefore everyone b ut me is wrong? yes!. I could very easily convince myself again that I have it...that is how strong the mind is.
Get the emg and put your mind to rest. I have had two emgs..they hurt, yes, but they are not that bad. You'll survive, and you will put this behind you one way or the other.
Good luck to you...
Happy
 
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