Hi all~~
    I hope you've all had a good weekend (so far!)..and are feeling better.  Yes, I have finally woken up!!  I slept yesterday late, and then we went out last night.  Today is also our one day of the week to sleep in until one million o'clock.  Then, we do that, and I feel kinda bad about it.  
   Anyway, NEW SYMPTOM ALERT.......
    It's so funny how, I think when we read something even a while ago, it stays in our subconscious until we start having it, at least somewhat.  I had read about the trouble swallowing thing, and don't think I've had that, but this one poster described it a while back as still having some crumbs in his throat after a meal.  Well.......guess what??????  Ding ding ding....you got it!!!  For the last day or so, I sort of feel like there is a crumb or something on the left side of my throat, and I wish I could reach in there and take it out.  It sort of comes and goes, but it is an irritating feeling.  I don't have any real sensative of "trouble swallowing"...this feeling that something is left in there only happens once in a while, and just seems to go away after a while.  
     Yes, Kay, that is a good description of feeling like it's Novacain wearing off!  The way it feels tingley and a tiny bit numb all at the same time.  And, I am 47, and been through menopause alread.  I guess I am still going through it really.  I started getting heart palpitations at about 31 years old, and went to cardiologists, and really only was able to diagnose myself.  I only went to the heart doctors to eliminate anything serious going on, beyond that, I knew that I needed to deal with them, and research them on my own.  The only thing I could definitely relate them to was hormones.  I would get so bad right before that time of the month, and then as I was definitely going through menopause, my heart was messing up so bad all the time, I even had an episosde of Atrial Fib.  That is why I am on an aspirin per day.  Anyway, as I went through menopause, the palpitations subsided a bit, but I still get them daily, and just live with them.  Once I knew they weren't life threatening, I decided not to go on any beta-blockers, because those drugs can give you alot of side effects, one of them being that the symptom you went on theme for, can get worse.  I think it's best to take the natural approach when possible.  By the way, Kay, I also am in TX!  The weather here has been nice lately, but I'm ready for some good storms!!  
     Capital H~~you said you recently walked 8 miles.  That is great!  It's always like I used to tell my brother~~he thought he had ALS with all his symptoms, and then he would run like 6 miles or something like that, and I would tell him that just the fact that he is so healthy and active, should tell him that he is basically healthy, and these other symptoms aren't stopping his life at all, as they would if it were truly ALS.  So, you can see how many people think they have all the symptoms of ALS, just because it's so scary.  He used to even get the trouble swallowing thing.  And, don't worry or get obsessed about your family and their longevity problems, you can overcome that for sure!  Part of it is attitude, I think.  My Grandmother is 102, and that is definitely attributed to the fact that she is very resilient, and dosen't worry too much about things.  She is pretty healthy in that she never drank or smoked, but she certainly did and still does eat her share of unheatly things, but she has an attitude about life that is wonderful.  She has a great resiliance, meaning that when life knocks her down, she gets right back up.  She also has an incredible interest in things, just generally, such as world events, news, and her family.  She is my most amazing person!  My Dad was an extremely health conscious person, a runner, a heatlhy eater, etc., and he died at 69 from a totally rare disease, I am sure you have never even heard of it, it's like one in a million.  So, it dosen't make any sense.  He was very careful about everything in his life, and it didn't matter.  It was so hard to have him get sick, we were all in such shock about it.  One of the symptoms of his illness was to have a 'scalloped tongue', which actually he did not have, but after he died, I was concerned about his disease being familial, and for so long, I was starting at my scalloped tongue in the mirror!  I do have that, but there are a million other reasons for it.  I got on some Chinese website one time that explained how a scalloped tongue can just be a sign that things are not in sync in your body.  You know, the yin and yang thing or whatever.  
    Anyway, try to keep a good attitude ( I know, easier said than done!!) and remember that most likely we are all o.k.  I know it's hard, because some days I wake up, like today, and feel kind of like I have the blues.  Could that be hormones???  HMMMMMM.....anyway, thanks for listening to all my stupid stories, like my sleep study problems, you guys have been great to talk to.  Remember that your mind can do all of this!!  (Don't forget me staring at the roof ALL NIGHT!!)....Talk to you soon, Val

I was prescribed propranolol  (beta blocker) at one time to help with anxiety. It is often used by musicians and actors to curb stage fright. It has something to do with adrenaline receptors, and apart from lowering blood pressure I think it curbs the effects of adrenaline, which is what causes tremor in anxiety.

Unfortunatly I have been taken off that as my GP did not like it as a long term solution to anxiety and now I am on lorazepam instead, and no that doesn't stop the tremors.  

My friend has had the same problem with her tongue and that is exactly what her dr. believed it to be.  CapH, I am interested to know about the beta blockers for your tremors.  My GP gave me toporol (which is a beta blocker) on one of my last visits, and I didn't understand why.  My blood pressure verges on being low, so I have not taken them.  Perhaps, I should huh?  Do you remember what mg you were taking?  I have to think that any sensation that can be made better with a beta blocker would be of benign nature.  Otherwise, that would be the treatment choice for all the bad stuff.  Val, are you awake yet?  I think we all need to go on a one month vacation with no internet availability....we might be amazed at how rest (of the body and the mind) would heal us.  You two take it easy and try to enjoy what's left of this beautiful weekend. (It's beautiful in TX anyway...hope it's nice where you are, as well)

I know I shouldn't but I have been looking at tongues on the internet. Well at least I can be a little reassured that the patches on my tongue seem to be something called geographic tongue, which can be caused by any number of things from spicy food and alcohol to vitamin B deficiency and is harmless.

I have not woken up with any new symptoms, other that I am concerned about slowly losing weight.

I am beginning to move away from ALS as the main hypothesis, as I seem to be getting a fair amount of pain as well.

As for my tongue, that still scares me, because if I look at it, there is an odd patch at the back on one side, like an injury of some sort.

I just want to get to a neuro as I feel that I am going down hill, certainly so far as my foot, and whatever it all is, it is making my life miserable at the moment speculating.

One thing about the twitches, some are random, like that annoying one on my forehead which is totally new, whereas others seem to be related to activity in those particular muscles.

I suppose that consciously or unconciously trying to test the strenght in your muscles, because you are looking for, or fear weakness can actually cause things like cramps and strains.

I definately think there is more than one process going on with me, that some of it may have a very simple explanation, some of it may have an alternative explanation, and some of it is caused by somehow lowering my threshold through anxiety.

Why I can't rule out ALS entirely in my mind, is because I am scared, I see no reason why someone with an existing back problem may not develop ALS on top of that, or anything else for that matter.

Oh well it only a month to wait for my appointment now.

Hi all~
   I hope I remember to say what I am thinking here!  First of all, thank you so much for all your posts!  It helps alot to know that others have the same symptom, because of course with ALS being so rare, it makes you feel like your symptom is not some dreaded thing.  
    I don't remember having anything acidic or sour, I did have somewhat of a large meal right before I went to bed.  This feeling on my tongue was something that I woke up with.  It went away, and I am having it just a little bit right now, and I just got back from my sleep study.  
     Skyhag, yes I do get the numbness thing on the tip of my tongue, and occasionally on my lips, I definitely have that symptom.  Also, I do get the twitching of my lips, and I do know what you mean by the teeth chattering thing, even though it's mild, it is there sometimes, and I have experienced that feeling exactly as you describe.  In fact, I had that a bit last night at the sleep study, and I thought it might be due to nerves.  
    The sleep study didn't go too well.  I am such a FREAK!!  I thought I did all the right things, I didn't nap during the day, etc., etc., etc......but once he got me all hooked up, and it was lights out, I bascially stared at the roof.  I tried to move around to get comfortable, which I was comfortable, I just couldn't go to sleep.  I finally did drift off sometime during the night, but I don't think it was for very long, and I woke up again probably around 4 or so, and then stayed up the rest of the time.  He came in at 5:30 and unhooked me.  At home, I have to do some certain things to get to sleep, and it was hard to do those things there.  I like to be very cool, for instance, and it was too warm there.  Also, I wasn't wearing the most comfortable clothes.  And, I had to go to the bathroom, but felt kind of stupid calling to do that.  You are hooked up to so much stuff, I felt like it was such a pain for them to come in and help me do that.  Anyway, the study is supposed to be in two parts, so maybe next time, I can try to be a little more prepared.  Maybe some wine!!  
    My tongue is feeling a little weird right now.  Hard to describe, but I suppose it could be described as a numb feeling, but more like the feeling you have when your arm goes to sleep, and then the blood is rushing back in and it's tingling, kind of like electricity.  It's a very annoying sensation to have something with you tongue like this, because it's hard to ignore.  And, as I mentioned before, it really makes me feel like all of this is truly something neurological with me.  I wonder if a pinched nerve could do all of this??  Or, being a spastic bag of nerves???  Hmmmmmm........
     Anyway, here I am at home at 7:30, and will probably try to sleep for a while.  It's so frustrating, because I wish I could just go to sleep at that place, so they can see all the things that might be happening to me while I am sleeping.  I often wake up with that gasping feeling, and I would love for that to be caught.  It makes me mad that I can't control my body more.  Why couldn't I just make myself go to sleep??  Nobody has this problem!!  
     I wish your appointment was sooner, Capital H, but it'll be here before you know it.  Sometimes you don't get many answers with these neuros anyway, and it's ultimately something that we have to deal with on our own, given the fact that it's not anything serious.  I am sure he will reassure you, your symptoms sound so stress related and also just the general hyper sensativity we all have to our bodies.  I tell you, once I started looking for atrophy on my body, I found so many weird things, I wish I hadn't even started looking!!  I am SURE I have atrophy in a few spots!  It's easy to find that stuff.  Try not to worry.  Talk to you soon~~Val  (ZZZZZZZZZZZZZZZZZZZZZ)

I hear a tone in your voice that is all too familiar to me.  I know that feeling of morbidity that is associated with health concerns.  Is there a disease or condition named for that?  I do not consider it hypochondria because hypos tend to enjoy poor health discoveries.  Maybe I'm wrong about that, but that has always been my perception.  I want, more than anything, to not only feel well but to believe I'm well.  I wish I would wake up tomorrow without a single symptom to write about.  I hope the same for you but, in the meantime, try to keep good spirits and don't overthink the symptoms.  Best wishes!

I guess I have survived for too long on not enough sleep and I am trying to get more. In true medical student fashion, on doing a pyschology course some years ago, I diagnosed myself with a sleep disorder, borderline narcolepsy because I go straight into dreaming sleep.

Anyway this morning I felt a bit better so far as cramps and twitches were concerned, however I did not feel energetic or refreshed. considering last week I walked 8 miles I did not feel up hardly to even catching the bus today as I went into a panic about half a dozen different alternatives to ALS all as unpleasant and deadly. It bothers me that I am losing weight when months ago I wanted to lose some, however I think my bathroom scales are a bit erratic and can't be trusted. Not losing weight is usually a positive sign that nothing is wrong with you, and if I am losing weight I figure its coming off the muscles not fat.

I have the teeth chattering, and have had that for years, it varies but I have percieved it more,  perhaps it is getting worse, along with the tremor in my right hand that makes it difficult to hold a book or paper steady to read it although it does not affect my typing at all, so I wonder what kind of tremor it is. The only thing I have ever seen to moderate that is a beta blocker, for when I was taking beta blockers all my tremors went. It is these tremors that have me worrying somewhat about parkinsons as an alternative, however maybe as you get older you just get tremors. I suppose the time to worry is when I can't do my buttons up, type, or play the flute.

I started back on the lorazepam today, as I was altoghter too nervy this morning, however I guess that makes me tired, as I tend to have hyperreactions to stuff like that, to the extent that I need caffeine to keep awake then.

I found myself slurring my speech earlier in a brief conversation,  However yesterday even whilst nervous I delivered an articulate enough interview to one of or national newspapers (I am almost famous) so I conclude that the odd slurring is more likely to be the lorazepam. (I hope)

I have an appointment with a psychiatrist in a fortnight, now because I feel I am getting somewhat out of control with my worries and feel borderline delusional in what I see that might not be there, I can't look at myself without seeing something to worry about. I am aware that in certain conditions like anorexia one actually does not see ones body as it really is, but then perhaps I am second order delusional, that is delusional that I am delusional :)

What concerns me is that I know the only relief for me will be to have a decent expanation for each of my symptoms that is not indicative of anything life threating. I used to have a GP who could spot something I would start worrying about before I did and tell me it was normal before I even enquired, but he is no longer there.

My worst fears, an equivocal "wait and see" neurologist who won't rule anything out until I outlive him, or to walk in and be diagnosed on the spot as so far gone as to be obviously not long for this world.

Well I don't want to die before I am 60  I will content at seeing my 6th decade, because I will at least equal my parents span if I do. We have not been a long lived family, and if I go before I am 55 as I will if this is ALS, I will claim the record.

You crack me up, girl!!  To date...you have been my best medicine.  I know these symptoms are no laughing matter and I never appreciate anyone making light of mine, but your humor in the matter serves others very well.  I hope you are rested by the time you read this and you will eventually find your sleep results pleasing.  I just thought of a way you may describe the feeling in your tongue.  Is it similar to the way your mouth feels when the novacain is wearing off after a dental visit?  This is the way I describe the feelings in my lips at times.  It is interesting that you and I have such similar symptoms.  I have forgotten your age, Val, but if appropriate have menopausal hormone issues been ruled out?  I am 52 and am in the middle of menopause.  I can't help but feel this could be responsible for some of my issues.  Stay well, Val because I think whatever you have...I have too:)

Hi Val...I see we're both "still at it":)  I guess you're about ready to snooze.  I'll be anxious to hear how that goes.  Wanted to ask if you have noticed any numbness on the tip of your tongue or your lips.  This is one of my many symptoms.  I also notice a quiver or vibration in my lips and my teeth mildly chatter (like when you're cold or nervous)  I'm just a big pile of mess!!!  I have no idea where to begin with my explanation of symptoms to a dr.  I've been posting here for two months and every day I list a new symptom.  They all exist...I promise!!  I know someday I will find answers. Let us hear from your sleep study results.
Kay

have you eaten anthing really acidic or sour? i've found that this can cause my tongue to have weird sensations. i get tongue twitching and recently on my lower lip - probably from doing sit ups and straining my neck. if you don't  have any weakness it's probably nothing.

Hi~~
    Well, I'm not really convinced that ALL twitching is benign, just that ours probably is, given how anxious we are about it, and the symptoms that accompany it.  I wasn't having much else than the twitching, so when I woke up with the strange sensation on my tongue, it was alarming to me.  It lasted for a while this morning, but after I was up and around, it has since gone away for the most part.  Strange!!  
    Also, I don't know if it is twitching, I suppose it could be a fine twitching, and end up feeling the way it did, but it felt more like a little jolt of electricity going through mostly the left side of my tongue.  Sounds to me like a neurological problem, so I was nervous about it.  If we look too hard for symptoms, I guess they are there!  My husband says that he wouldn't even think twice if he had that symptom that I had this morning, so I guess it's just how you look at it.  I probably wouldn't have thought that much of it either, had I not been going through this twitching thing, and hyper-aware of any neurological symptoms for the past month.
    Tonight I go for my sleep study, so we'll see how that goes.  Have you ever done one of those?  I don't know why the neuro wants me to do this really, but I guess I kind of have to do things in the order he wants to get to an answer eventually.  He suspects, I think, that I don't sleep well, and that can be a cause of twitching.  He explained how the brain, when tired, sends the wrong signals to your muscles, and twitching can occur.  I am just concerned that we are eliminating all of the more benign things, and that will bring us to the more serious causes of my twitching.  I am pretty sure my blood work came out o.k., and if this sleep study dosen't show much of anything, then what??  Anyway, I'll let you know how it goes.  Thanks for the tongue info, so you have had twitching on your tongue, or a 'weird sensation'??  Thanks, Val

Now you are getting as bad as me :) I thought you had been convinced that all that twitching is benign?

I thought odd sensations were not supposed to be part of ALS.

Trouble with me is I can see my tongue misbehaving when I stick it out, but I can't feel it, it also seems to be on one side of the tongue, the left side naturally as most things seem to be more on my left than the right.

As for me I am beginning to see that my tongue looks smaller on the left than the right, but I am going to try not to look again as it's not going make any difference. I am sure I shall find something else tommorow.

Anyway I obviously do not sleep well, I wake up feeling worse than when I go to bed. One thing I have noticed that relaxes me is a hot tub, I can lie back and not twitch at all.