I am so scared of having ALS or some neurological disease I feel dead already

[jerry2]

First of all, two "sorries". First about the topic, I wrote what I feel, I can not find any other thought in my mind right now. The second is: Please excuse my language, I am from Europe, English is not my native language. I have hard time learning difference from twitch to fasciculation to tingling, tremor, shiver...

Anyway, here is my story. I do not know if I will really die from all this or not, but I do know I have health anxiety phobia for at least 7 years, is it going on and off as time passes. I don't think I have some general anxiety, if I am without heath problems I feel quite OK, but most of the time I do have health problems.

As I told, I have had many health problems for 7 years. Up to last month I've had urinary tract infections without infection, stomach problems without any visible problem on gastroscopy, big colon problems from constipation, diahhroea, mucus, burning for months etc... Nothing was found on colonoscopy. I did have cancerphobia for all the things I mentioned before, but now I have a phobia that I have a neuron motor disease, MS, cancer in brain... To be honest, I fear ALS the most now (because of the symptoms I guess).

I do have another problem and this seems is not in my head, but real. Unfortunately. I have some wierd join pain for years. Better to say "movement pains". First my shoulder hurt me for 3 years! Nothing was found. Then my ring finger was stiff and I couldn't move it very well (but no inflamation was seen), and that subsided in a year. I have left hand middle finger that I can not bend so that the cracking sound would be heard, it hurts so much. There doesn't seem to be any inflamation but the joint that connects it to hand is very stiff... 6 months ago my leg started to hurt. I have trouble bending, my knee hurst on the outer side up to my back muscle (I don't know it's name). So it is half muscle pain and half knee pain, but you guesed it: no swelling.

Ok, so I went to orthopedic to show the leg. He found nothing wrong (see the pattern) and said it was ilogical to hurt when bending not when walking. Send me to x-rays because the problem could be in my spine he told me.I went and they took 14 pictures, 2 of the hip/spine region and the rest of the fingers and wrist. Why is that? Becaused for 4 months my fingers on both hands hurt. More on the left but some days also on right some days right is Ok. Same pain both hands. I wouldn't call it joint pain at all (except for the middle finger that is still and hurt when contracted fully). I can not pintch with thumb and index finger, but the pain is no in joint, it hurst me from index finger to wrist somehow when I try to grab something or press with index finger (like a button).

Anyway, X-rays showed some suspicious enlarged joint membranes in 5 joints of the fingers. But wierd is, none of them except thumb is the joint that hurts. In the hip they found suspicious erosion of the bone that wasn't there 7 years ago when I took first x-ray for something else. Ok, so that explains my right leg problem? No. Because problem hip is the LEFT one. I feel like I am crazy or from space somewhere.

They suspect me of Rheumatoid arthritis (( They have to run more tests of course. But none of my joints seems inflamed. Well... That didn't scare me enough but apart from what it seems to me like tendon problem with hand (it is really more the tendor felt pain not the joint paint) and I might really have RA because they have actually found something, I have neurological symtoms the last month (before they found RA!) and I am getting more and more depressed and tense.

Last 4-5 weeks I am having apart from the obvious finger pain in hands "neurological problems". First started the tremor, shiver, I do not know how to call it. My hands up to elbow tremble at night. Not all the time, but this wakes me when happens. After waking up it soon stops. This  week I didn't sleep mostly none (I did but it was an unrefreshing sleep) because I got so scared but I felt it is I guess in both arms and if I touch hand by other hand I can feel the tremor.It is like tremor, shivering, not very intense, like small electic current in my hand. It feels like a rest tremor and up to now it is only hapenning AT NIGHT.

The hand pain and the tremor didn't scare me yet to death. Reading this you have to think I may have Carpal tunel (on both hands, wierd?) because my thumb, index and middle finger are involved right? Yes, but I do have another symptom. My little finger and ring finger get numb and stiff at night usually and I have problems with this. After much reading this could be another nerve entrapment in elbow. But can I have 2 nerves pinched? And why the tremor in both hands? Night tremor doesn't sound like a symptom, I can not explain it :-(

Anyway, to come to the scarry part. 10 days ago I didn't wake up because of tremor, but of fasciculation / twitch in my left thumb. The fasciculation made my index finger jump right. This happened all night long with no sleep. Tremor stops at day but this isn't. I was watching the twitch it was very nice seen when the current moved the muscle. It is like fasciculations that are on youtube, exactly like that. Now that was scary. I was afraid of stroke or something so I made my big mistake.

I have typed in google "finer twitching". My eyelid of course twitched many times when I am nervous. But in 42 years of my life, finger didn't twitch. I thought I had something bad like a stroke. And google brought me a million links about ALS.

When I first read about ALS it was not some light text but for the practitioners how to handle patients, about feeding and decision dilemmas when to turn them off from the breathing machines. Instead of the "What can help" that even rheumatic artritic has some sort of "cures" to prolonge better life, ALS has none. To make things short, I have never EVER read about such a scary disease in my life. RA, cancer and AIDS seemed to me like flue compared to ALS. This seem to have no hope and what a way to die.

From what I told you about me you can figure out what happened to me now  I examined my hands for any "holes" and I have found that my left and right hands are very different. The left is more ill (remember my finger tendon pain) and not dominant. The big thumb muscle I would swear I see a "hole" in it. Hole is not right word, I don't know how to say. Seems the muscle is not so tight and buldged as on my right hand. Could be muscle atrophy??? In the midle of my palm on the right hand you can not see anything, on the left hand you can clearly see the 2 middle tendions and feel them like a vein in the middle. They can be swolen because palm burns me this days, but I fear it is muscle atrophy. In the right hand they are not visible so much, just barely. Is that the difference in hands and the dominant has more muscle tissue? Apart from that that my left hand hurt and I don't grab things with this hand very happily. The more I look the more I think this could be muscle atrophy I've studied all the pictures on internet on this topic, of course on the pictures where half the muscle is missing - my hand is not like that. It is the details I found now. I may be mad and maybe the tendions were more visible and felt in the left hnd palm all the time but I didn't pay attention. I can not be 100% sure. And my thumb muscle was maybe a little smaller on the left hand forever. But the ALS thought hunts me.

And this is my problem. To not deal with things the proper way. I mean, I could have ALS, but there is no reason yet to picture myself how my son will grow without me, I think it is not a way to go to think I have a 2/100.000 disease. And I am 43, computer programmer.

I have some twitches (the finger one is not there now but I don't dare to say it is gone), from the moment I read about ALS (maybe that day others would also start without googling, that day was the twitch ON point I think), I got more twitches and my eyelid twitches since. And my left half of face feels not right, half numb. No, it is not numb, but... strange feeling, like skin would be too tight for my face on the left side. Ok, scared even more, but this is no ALS sign I guess... I panicked and I lifter some weight with left and right hand, I can not see any weakness. Maybe there is, I can not see it. My left hand it is of course harder to open jar than with right, it is not dominant and I have hard time with pintch and opening jars, but not becasue of weakness but because of this wierd pain that goes from my fingers to the wrist  But I can not be sure.

And of couse I know none of you know what is wrong with me (apart from anxiety), I have to go to rheumatologist and neurologist. But here in my country you have to wait ... few months. And I am literaly dying in my head of fear. I have "face problem" since I read about ALS, that's the truth. I have arm twitches since then, I only had the finger twitch before. For few days it is a little better and the night tremor scares me the most. I wake up like I am deadman walking, literally.

Few days ago my arm was half numb when I woke up (little finger) and one day later I got another shock. I could feel the middle finger on the left hand but couldn't move it for a few seconds. I freaked out, went to ER and they didn't have a clue gave me Helex (sedative) which doesn't help me.

Anyway, this is my story till now. I find some relief in running, I run 4 km a day, my legs are ok apart from the painfull croutching because of my knee. I have some back pain, if I am in bed more that 7 hours mychest rib cage hurst me and my pelvis does hurt sometimes. I have bad posture for decades...

I even managed to scare my dear wife.  And I am very sorry for that. I scared myself also. I just wish for nothing ... at least nothing major. I will go to my doctor and they to the specialist, of course. But it takes time. And I am loosing my mind right now. I may go to hypnotherapist to help me with my anxiety. I always told my wife, it is my body who make me symptoms and I react with the worst diagnose, and it is true. But I should be able to not think I have ALS right now I think. It is like some forced thought, I can not get rid of it, I can not sleep. And I don't even dare to sleep maybe the twitch or nubness or tremor comes (something usualy strikes me at night). I am so scared I have never been so in my 42 year old life.

I am not even sure what this is, is it ALS, MS, tumor, some nerve entrapement somewhere, tendon inflammation or RA (this was evidenced on xrays). But either I have RA or not, I think I have mental problems. I should not conclude myselft to death, there is no medical evicence yet that I am terminally ill. And the thing that I have not found anything on night hands tremor that happens every night for a month is not reassuring to me :-(

Thank you for listening, take care

Jerry

[JER2911]

I should not conclude myselft to death, there is no medical evicence yet that I am terminally ill. Jerry

You hit the nail on the head right there!..That's the problem with those of us with HA (me included)...we start digging our graves, before we are even sure we are sick. 

I can relate.  I went through the ALS scare about 5 years ago.  It started with twitching and stiffness..and I committed the Health Anxiety number one sin..I, like you, googled "muscles twitching"...it was downhill from there for nearly a year.  But, I'm still here, five years later (still twitching)..but I DO NOT have ALS.  The number one thing that goes along with ALS is "clinical" weakness..which is much different from just "feeling" weak.  It is a weakness as is, you can't lift your wallet, button your shirt, pick up a gallon of milk..etc.  Without this hallmark sign, you do not have ALS.

There is a conditon called Bengin Fausiculation Syndrome and it is very common..it is much more likely that you are dealing with that and not ALS.  You can google that term (its not scary).   Or, you could just be twitchy from anxiety..(also very common).  The stiffness in your fingers, etc..can very well be attributed to your line of work.  You are a computer programmer..the way we have to sit behind a computer all day, can cause some joint, muscle and skeletal issues. 

So, with all that said, you are right now under the care of your doctors who are ruling out things like RA, etc.  Let them evaluate you and order the test they think you need and trust that they know what they are doing...they went to school wayyy longer than Dr. Google did   

Welcome to the board!

[jerry2]

Thanx. Well, my left (nondominant) had is kind of weak I think. I have hard time using it because of the finger palm pain, so I am not sure if this is cliicallweakness or just weakness because of pain. Other than my left hand doesn't feel weak (biceps, triceps), although it is weaker than my dominant hand.

In ALS I guess you can not button a shirt, but not at the beginning.

I know about BFS also yes. The most scary for me is not suspected RA and even hand pain (I've had this for 5 months, maybe I have some atrophy because I don't use that hand much), but the twitching and tremor. Nobody knows if anxiety can cause the tremor of hands at night. Because it is really scarry, your hands and arms shaking a little (plus pain and then some twitch, you get the idea). And this is every day. But I have not seen yet the shaking, in the morning when I am fully awake it is gone, like it is connected to the state of consciusness. When I lay in bed at 5AM it is there, if I go to toilet it is gone. And when I wake from sleep it is there again.

Add to this the wierd finger stuckness, and numbness... and you can get the idea how I feal scared.

[colls22]

Hi there,

I completely understand your fears. I have had the same fear for the last two months. All I can ask is that you please not go as far with it as I have, as it's very, very scary!

You do not have ALS, that I can tell you. I echo much of what Jer2911 has already said, but emphasize again that the hallmark symptom of the disease is weakness. Actual, clinical, profound weakness. You do not have this. Twitching on its own without weakness is not symptomatic of ALS. I get twitching everywhere. Really, everywhere. It is absolutely related to anxiety. So be prepared that your twitching can continue, may get worse, and may spread. Do not let this alarm you. Also, the numbness you discuss is not indicative of ALS. ALS does not typically present that way.

Lastly, I myself have experienced the same body shakes or tremors you mention. I noticed it first the night before my first EMG exam, as I was sitting on the couch. I thought it was the subway travelling under our building, but when I put my hand on my other arm, I discovered that it was me. Very scary, but I did some research, and discovered that many people suffering from health anxiety have the same thing. It seems to come and go with me, don't know what triggers it.

So, please try to rest assured (and thank god) that you do not have this dreadful disease.

[jerry2]

But I can not test for clinical weakness in my left hand as I have pain in most of my hand (waiting for rheumatologist on that), I can not do much with left hand and I guess I have some weakness there. I can button yes, I can grip something heavy with whole arm, but fingers are not so strong, I am in pain with every grip and press... So I CAN NOT test this weakness...

You did have the tremor at night? Mine is only hands and arms... I have nevery found this symptom on any board, night tremor in hands only... I had anxiety body tremors before but during the day I had it like you describe. Now my hands go into shiver at night only...

I am drinking St. John's worth now, I have an psychiatrist exam in 2 weeks, neuro exam will unfortunately be later than my neuropsychiatric examination. I've been on such fear last year because of constant burning in my ...  colon. But I was not so severe. Maybe it is becaue with cancer one does have some hope in contrast to you know what...

The day my finger twitcheed night and day and I googled for finger twitching :-( Since that day I have left half of face (jaw) half numb. Not numb, but a wierd feeeling there, as my skin is tighter or like if skin here is more sensitive or whatever, doesn't feel right. As I googled imediately after first finger twitch I am unable to know if I wouldnt, would all this spread or not. Because I remember clearly I was reading about ALS paliative care only that half my face got this sensory feeling and never really went away. Maybe this would happen anyway because the finger twitched and my tremors obviously begin BEFORE I googled to ALS :-/ So Something IS wrong with me.

If I come out of this alive, I promise I'll become a better man, husband and father. I am not a drinker or anything, but I could be better and not be nervous about little things. I guess this ASL will hunt me forever in a way that my problems in life are really not so great as I thought. I FEEL that I am in a near dead experience and to my mind I guess, the experience is simmilar if I would be dying or if I am not. Mind doesn't know... So I can only hope this is just experience and I'll become a better person out of it. Oh well...

[IrishWeather]

Hi Jerry,  I could have wrote your post myself.  I totally understand what you are going through.  I am currently in the middle of an ALS fear myself and just like you, it all started when I had pains in my hands (and now my shoulder).   Like you, I also work in software, and so am on a computer most of the day.  It was only AFTER I started worrying about ALS that my twitching and buzzing started.  I do notice that they come and go depending on how distracted I am.  You say that he tremors happen when you are in bed - but since you can experience them you are obviously awake (at least partially).  I have something similar - if my legs twitch, its likely to be just a split second after I wake, when I'm still very groggy.  I don't know why it it, but the rational me is still pretty sure that the twitches and buzzing are all anxiety related.

I think that ALS is the ultimate HA worry.  Very easy to have the "symptoms"  difficult to really rule out (even if chances of having it are almost zero) and terrifying to contemplate.  At least with cancer there is the chance of being cured.  I also noticed that you mentioned your children.  I think that HA might be more common in people with children, as I've heard a lot of people mention that they fear leaving their children without a mother/father, and as the father of two very small children, I feel this profoundly myself.

Listen to what Colls and Jer say - those guys know what they are talking about!   Two things in particular to remember - (1) pain is not a feature of ALS (2) muscle twitches are VERY common with anxiety -which you already know you have.   You will be fine - I think that sharing your worries here is a really great first step.

[jerry2]

Thanx for the post. But my twitching started BEFORE I read about ALS. For 5 months hands pain I never googled into ALS. I didn't worry about the hand pain although it is more deliberating than twitches or tremor, but doesn't scare me so much.

I then found my tendons on my palm side of the left hand are seen so much it scares me, first I thought they must be swollen and this is the pain I feel shooting from fingers when I press something using index finger for example. But then my inner woice told me thiw were no swollen tendons but dents between them - muscle atrophy. Now I am unable to find out how did my palm on left hand look like before 3 months. I am sure I would notice the tendons so bulging out (the index and middle finger one), but then again even in ALS it is not just a click and muscles are gone and one day I noticed then day before I didn't look. Did I find something that was allways there? Anyway, my palm now hurst like it would be in flame, maybe my tendons really are swollen and have some problem (less deadly than ALS).

First only my left hand had tremor at night and now both, but right hands is almost without pain, some days I feel little, but not much. So I guess tremor is NOT because of pain. So my twitch in the index finger (the one that hurts me) and tremor startd BEFORE my ALS lookup. So I fear there is something really wrong. I had tremor for 14 days before and I noticed it, but didn't bother (could you believe)?

Well, as you pointed out, I am unable to tell you WHEN do I have it. When I go to sleep I don't (some twitching sometimes), but no tremor. I then sleep for few hours (deep sleep) so I obviously do not know if I have tremor or not :-) But about 4-5 hours into sleep I start waking up because of tremor. At least I say BECAUSE OF. FACT IS I did wake up before at around 4 AM, 5 AM, every hour and sometimes I could sleep back and sometimes not (when I had to take my son to the school I am nervous and can not sleep any more), so I did wake up before.

But now when I wake up I have this tremor. It scares me and I can not sleep back immediately. I make a fist to strengthen muscles and it is gone, when I release the hand it is there again even worse. But seem linearly as I wake up (not being able to sleep back) it vanishes. I still have some soreness and wierd sensory feelings in my hands but the tremor is gone. 2 days ago I rushed at 4 AM to toilet so I could see if I can only feel it or see it, and it was gone... I then return to sleep and eventually I sleep again and I again feel the tremor and say to myself not again, but I do remember another dreams. That means I have slept again and the tremor returned.

It is like the tremor is somehow conected to my level of consciousness...

[ColdHands]

Twitches can be caused by many, many things.  ALS  is a muscle wasting disease, and in someone younger like yourself it usually very aggressive. 

My other died of a disease very similar to ALS (actually her neuro thought she had ALS and Mayo said she had MSA)  Multiple systems atrophy is where the brain degenerates and ALS is where the muscles degenerate.

Though twitching and some numbness is a symptom, one of the main links in this disease is weakness.  Profound weakness.  How long have you been fighting this?  If this were ALS you would have progressed more by now.  There are slow moving versions of this, but I think you would know by now.  Do you stumble or have a hard time lifting your feet when you walk?  Do you have numbness in your feet?  How is your swallowing?  Breathing?  Do you find yourself choking on small amounts of food or moving food around in your mouth until you can swallow it?

Just know that Motor Neuron Disease and MSA are extremely rare. 
But if you've researched this, I'm sure you know that already 

[ColdHands]

Mother not other...lol

[sixpack]

twitching is not NOT, NOT indicative of ALS.....

those with ALS who twitch do so MUCH later in the disease.

PLEASE know that ALS is a disease of those over 50 in most cases.  THere are hundreds of peeps here who have feared ALS and 0% have ever had it.  There are hundreds of threads about twitching.  These folks all have anxiety/stress causing this. BODIES twitch.  My 14yr old talked about her arm twitching last week and I smiled.  I twitch all of the time.


TWITCHING is most commonly caused by frazzled nerves due to stress and anxiety.  Do NOT fret about twitching

[jerry2]

ColdHands, I am sorry for your mother, any such disease is terrible even for someone who doesn't really have it, just reading about it.

I fear I DO have some muscle wasting below my thumb. On the left hand muscle is smaller and in the middle there is a little dent, if not dent a flat, on my right hand muscle is very round and skin doesn't wrinkle, on the left hand it is seen it is not so round. I fear this is muscle wasting I don't know how long I had problems, the tremor is 1 month, the twitches are 14 days I guess. The left hand pain has now also moved to palm which is burning me, tendons are very visible like swollen, the pain I have 5 months. But I do not know if the pain in my hand and tremor and twitching is related. I only have left hand pain mostly and I have now tremor progressed from left hand/arm to the right (only at night I have tremor!). Twitching is everywhere mostly in my upper and lower limbs but also in groin, in belly... At the moment last few days it is not so profound. I mean I get a twitch or two, it is not so long that I could see it with my eyes, it twitches and it's gone.

Tremor at night is getting worse, but I saw TREMOR at night is no symptom of ALS whatever. I see hand pain is also no symptom of ALS. Am I correct?

I fear if it is ALS it is the beginning of it. Of couse I can walk, I tried to run today 8 km because I was in such fear of death, I could (barely). I know you will say that ALS could not even walk. But not the first month, first month only one limb is affected usually :-( Like my left hand now :-( And I see some atrophy as I told, but only under thumb, I have no problem with the strength of the ARM, but I have problems holding anything becaue of PAIN. Can not really test my strength because I am in pain in hand. My other hand and arm is OK (a little of the same pain though, I would rather not move furniture with any hand, something is wrong with them) but I have vented radiators today with my right hand and yes, I could turn the bolt. I can do 10 pushups (barely) as it involves armes not hands. My walk is ok, my talk is OK.

I triy to calm up till the evening (it is evening here in Europe now) but the night is terrible. With this wakeups with tremor. I wake up 10 times during the night and tuck the tremor hands and fall back to sleep again, with nightmares and vivid dreams (last night doctor told me in dreams I have 50% chance of having ALS etc., I know this is stupid). I do not know if tremor has progressed this 14 days, by my fear has. I remember first days I had tremor I woke up, said to myself oh no, now my hand shake and sleep again... Now it seems to bother me so much more, but it does seem it was in left hand before and now it is in both hands. Like progressing MS, ALS or I don't know what.

Maybe I am just saying ALS. Maybe it is the fear I don't know what is going on and I have no control over it and my hand hurts more and more and I tremble at night and I twitch and can not stop and nobody knows what is wrong, maybe this is the ALS metaphore only. No, I fear ALS, but it doctor told me it can not be for example, my fear would go to MS I guess... It is a fear that my brain is dying, sending tremors and twitches and pain to tell me that every single day. Only one day withought this tremor would mean a new hope for me.

Sorry for my lenghty letters and my bad English. But I have googled so much, can you believe I hardly am able to tell my symptoms in my langauage now :-/ (this is considered the most funy stuff I am able to write now).

Sixpack: yes, being 42 I guess it is less than 2/100.000 chance to have ALS. Only 5% have it under 45 I think as the SD is 9 years. But the probability is not like that to say than probability for me is 1:1.000.000 because you have to take into account under 32 nobody gets it etc... I think with 42 it is about 1:150.000 to get it in any year.

[colls22]

Don't apologize, I understand what it is like to feel so, so scared.

I'm not sure what I can say to reassure you at this point except that again, you do not have ALS.

The alleged atrophy that you describe on your hand is definitely not atrophy, as if it were, and I cannot emphasize this enough, you would have profound weakness. Same thing with you leg muscle and your attempt at running the 8km. I don't think you quite understand what actual clinical weakness is. There would be no feeling tired or not really being able to do it, you simply would not be able to. I don't know how to put it more clearly than that. It doesn't matter whether it's at the onset (ie. first month) or not. If even one muscle in your leg were to not be functioning, even walking would not be possible for you in the way you normally do.

I know how hard it is, but at this point, I think you either need to accept what we are all saying (and what is true!), or you need to have a proper neurology consultation. Let me be clear, I do NOT think you need one, but it would seem as though none of our reassurances are helping you, so maybe only a doctor would. That being said, please know that people like JER2911 and I have gone through exactly what you have, so though we are not doctors ourselves, we know a great deal (more than we should) about this disease, and are giving you fairly educated opinions.

Please do message me again if you want to talk further, but I again assure you, you do NOT have ALS. Enjoy your life and do NOT let this fear grab hold of you as it has me!

[1looneychick]

Hi Jerry!  I'm sorry you are feeling so bad   I noticed in your first post that you mentioned having urinary tract infections without the infection.  I'm not sure what you meant by that but I was wondering if you have been taking antibiotics?  The horrible round that I am having with anxiety and some other issues got started because I took a very powerful antibiotic.  Some people who are prone to anxiety or depression or muscle/tendon problems can have a severe reaction to certain antibiotics.  You can google fluoroquinolone toxicity to see what I'm talking about.  Just a thought........feel better soon

[jerry2]

1looneychick: I meant I did have symptoms of urinary tract infection and I took antibiotics for 10 days, yes, but I think I didn't have infection as they didn't help, after 10 days I was still urinating too much and too little :-( But I've taken this antibiotics in the past years and decades and they didn't "harm" me.

colls22: Are you sure a little dent in thumb can be felt right away? I hear what you are saying, it is just I mean this is the beginning of the disease. I am sure ALS doesn't strike so one day you can run, the other day you can not walk. I have some "disease" now in both hands but not yet in legs, is that not possible? It doesn't go so fast any disease I am sure.

In the morning I am so weak. I am not saying clinically weak, I am saying I am so exshausted, "morning half" of the night I am half dreaming half my hands are shaking and have all this funny feeling as if they will go numb or what. I repeat to myself all night: "I am ok, I just have some problems", but by the morning I don't know if I am shaken more by the shakes or by the terror in my head of what is going on :-( I feel my hands more fatigued each day, but that would be no wonder if they are trembling all or half night... On top of that I get a twitch in one arm and the next second in another in the morning. Not strong, lasting for minutes but 1-2 single or double or triple ones if you know what I mean. Just to enhance the feeling one day my hands will be numb and dead.

I will go to the neuro of course, even if I have stroke in the waiting room (the waiting room is so scary when I wait for the final words of the doctor), but I have to wait I am not sure, a month or two so it is quite far away if I make it till then.

[jerry2]

But I did find out that the 90% of the twitches come when my muscles are relaxed somehow, if I am at the desk or sitting or laying down. Either I do not feel them or they aren't there when I run. And I found that many times that I have more persistent twitch (more than 2-3 times at the same place) I can harden the muscle and it goes away temporary.

But the finger (index) that started all and laster for 1 day didn't go away with this "technique", so I say that this is valid for most of the other twitches (except eyelid twitch also).

Does that mean anything in regard to ALS?

[ColdHands]

Jerry,
I think you need to get a good Neurologist and get a consult if you are this concerned and are having as many issues as you say.  One of the previous posters is right, that we don't think you have ALS, but we are just people on a board.  I am not a doctor, and I don't think anyone here is either. 

When I am having anxious issues about health, but have genuine symptoms, I go to a doctor.  I know true HAers don't accept what the doctors always say, but I guess I am one that generally does.  My issue is that until do get a test, i think the worst and assume I am dying of a bad disease.  In my case right now, Pancreatic or Liver cancer.  Believe it or not I actually found something googling last night that made me feel "better", though this isn't the norm.  Most websites you google, especially forums (not this one, but ones that are for the disease you are googling) are an oversample of people that have the disease or people that think they have it.

When I was at the Mayo clinic with my mom, I googled until my eyes bled.  But I realized a lot of things while I was there.  The many many tests you have to through to make a diagnosis or rule out ALS.  ALS is something that is hard to diagnosis even later on.  You need an EMG, which is the gold standard for diagnosis, but sometimes EMG's are not accurate.  So if you are willing to go down this road, just know, it may not be an immediate diagnosis. 

I know I am not one to give advice, as I have my own issues with anxiety, but I will tell you this.  While you are in the middle of it, its impossible to make rational decisions and your mind can make you have all of these symptoms.  Sometimes it makes you feel better if you know you are doing something about it.  So if you want to face it, truly face it, find a good neurologist, get your EMG and go from there. 

[colls22]

I hear you, Jerry. You're correct, obviously everything isn't going to simply stop working simultaneously, however yes, when dealing with ALS and muscle failure, the weakness is fast and it is substantial. I may not be a matter of the inability to hold a key or walk properly developing literally overnight, but conversely, it wil not be a period of months either.

I am not a doctor, so I can only comment on what I do know, such as the above.

I should also point out that twitching while at rest is another good sign, as that is very characteristic of BFS. My twitches are the same way - I might be twitching or buzzing like crazy, but as soon as I start doing something, they go away, at least temporarily.

You obviously have someting going on in your hand, however that something is explainable outside of the context of a motor neuron disease, and I assure you, definitely outside of ALS. I'm sorry that you will have to wait so long for a neurology consultation, as I do know how frustrating that is, and am very glad mine happened quickly, if for no other reason than for some peace of mind!

So, try to take care and at least consider the option that you are wrong, and that you are not dying from a deadly disease. Could help to talk to someone (professional) about it too. I'm seeing a psychologist and she's wonderful :)

Best of luck.

[ColdHands]

Good points Colls.  Sorry Jerry I reread and realized you are in europe and my have to wait fairly long for a neuro consult.

Colls made a good point.  Twitching at rest is a good sign.  And he is also right about the weakness being substantial.

When we say weakness, it is really, truly weakness.  I am "weak" in the morning too after I've had a bout of anxiety.  Sometimes shaky.  When you sleep your body shuts down, and you are going to be weaker in the morning. 

I hope your appt is soon.

Thanks

[jerry2]

Thanx guys. Yes, I have learnt from past mistake I did refusing to go to colonoscopy soon and I waitet for 5 years (yes, that is 5 years!) with symptoms waxing and vaning over time but after I finaly gave up and took the test, it helped my anxiety very much. I then said to myself that I'll never wait so long again to take the test, no matter what kind of test.

But now I have a problem, because you can not go to a neuro instantly and waiting for 1-2 months can make a difference in being sane or insane. So I am not refusing to go to a doctor, it is just I can not go overnight. I do have after waiting for 2 months the rheumatologist in 10 days about my hand pain and the rheumatic artritic changes the xray forund on some of the synovial joint membranes (the diagnose is not confirmed). I will also begin the psychiatric counselling and therapy in 13 days, I managed to "squeeze in" in short time, to try to deal with anxiety. To try to be "funny", I will need the psychiatric help if I am dying or not.

The left hand is weak and I've found atrophy or as I am not a doctor, my thumb muscle is much smaller than on my dominant hand (but I have pain in the first 3 fingers for half a year), I am not sure if it is a dent or just flat below thumb, I can tell you this: if I wouldn't check my hands for muscle atrophy it would not bother me, it is not like some pictures on the net when you see it and say: half the hand is missing... It could be sign of atrophy but of course it could be there forever. I am not sure how smaller the thumb muscles are on the non dominant hand. Now I admit I have made the problem worse, looking at it, it grows in my mind, I can see the skin a little wrinkled there and on the right hand it is not etc. The tendons on the left hand are very visible, if it is atrophy it is big dents between tendons, maybe the tendons are swolen in the palm or maybe it was all there before. When I looked I noticed how my tendons are seen on one hand and on the dominant right not. Now I wonder, if this was there before, it could be from forever. But I say I would seen it. But if this is so, why didn't I? Even ALS can not "eat" your palm in 3 days I guess, so if I say I would see it, I should seen it 3 weeks ago not only 14 days ago, right? This suspicious diference between hands did happen after I read about ALS and I went to compare the hands and found some disturbing differences.

My weak hand. As I am in such anxiety, the only thing I can do is excersise with my legs, run or bicycle. I was bicycling today for 35 km and also some in the hill. Down was very steep and I had to hold both breaks very hard and I managed to do it, because this kind of grip is not the one that hurst me, it is the fingers that hurh (whole hand hurts then) like pressing the door button or turning a knob. Pressing brakes was no problem and I didn't feel any weakness, although my left arm was always about 20% weaker than my dominant one and I can not use my hand very good this half year also. So I didn't find weakness in the grips that gave no pain to me and I guess pressing brakes does need a big force on many muscles.

I have understand about ALS that it first take one limb. That meant to me one hand will be "dead in the water" before it spreads. So that if my lefs are ok, doesn't say I don't have the disease I guess, it could still be in hands. Wierd is that I get twitches in my legs also not just in hands. For example, I have returned from bicycle now and I have had more than a dozen twitches in my right knee. But then again, if I were not so sensitive listening about them, maybe they were always there but because they really do not hurt, if I wasn't focused maybe I would also have them. I guess I could also be overworking my legs and the twitches are in my legs more now.

They usually go if I strenthen muscle yes, but the first index finger twitch didn't go that way :-( And the exelid twitch also doesn't go that way.

I think the scariest thing for me if the symptom nobody can relate and no general doctor can find any clue in it, the night hand tremors. Tonight I found out that the hand may not have tremor but when I move it tremor comes. And if I strenthen the arm it isn't felt again, but when I release the strength it comes. I can also self induce it if it is not there I strengthen the arm and release it and it is there :-( But that works till I stand up and dress in the morning, then it doesn't come again (till now, I never say never).

Now I say this: If I could self indulge the tremor in a psychological way (as this kind of tremor I guess doesn't corellate with hand pain as it is now in BOTH hands, even the one that has "normal" muscle!) and it doesn't correlate with ALS. I have not read ALS patients having any tremor only the one that comes when your limb is so weak it tremors when taken a cup of coffee for example. Maybe I am way wrong here, but ALS and resting tremor doesn't get many results (tremor seem to be associated with Parkinnson but at sleep it is gone usually so...).

What I don't know and lasts for more than a month scares me so much, that in the morning I usually have to grasp for air, I am so anxious in the morning, the night is terrible. This tremor STARTED BEFORE I read about ALS! So if I self induced it... I really think I couldn't self indulce such thing, I can do diahhroea, nausea etc. but night tremor?!

I will be honest, I have other problems in life that bother me quite a bit. I am 40+ and my wife is 40 now and she wan't another child (we have one) and I do not. And I am torn between what I want and fear and between what is my right not to "give her" another child. This "problem" is there for few years, but now we are somehow to our "good fertility era" ending and it is soon or nothing. I can not say maybe for 10 more years if you know what I mean. This in my life I am finding very stresfull, but I always live with this health problems and I am glad we have a 6 year old and I really fear I could not cope with another baby now. But it is a terrible burden to me, as I don't want to let my wife down.

Now... if my trembling started because of this dilemma... Well, I really can not believe this. It would be "too much" even for the Freud I think. Mind can not make my hands tremor at night.

PS - Now that I bicycled 35 km I really found I have lot of twitches in my legs when I am sitting here at the computer :-( I can not see if this can be related to bicycling. Because I get twitches in other parts fo the body also (not at the moment).

[jerry2]

There is also this constant buzzing in my hands, I can not explain it, I don't even know if this is motor or sensory. At day I think it is sensory vibration feeling at night as I told, I am trembling hands.

[jerry2]

Hi, it's me again.

I seem to be getting nevrological appointment next week and I feel like this is my death sentance. The "condition" is really unchanged, but I have some findings, can anybody relate:

1. The "big" twitches like the one in my finger and in my arm, the ones that lasted for a minute if I didn't stop them, are now more rare. Instead I get tens of short lived (mostly single twitches), one in the arm, the next moment in the leg etc. Some positions are the same some change. They are not so persistent but they are many.

1a. It really seemed that my twitches were started in ONE day. Like I didn't have ANY a day before and I had MANY the next day. It was not like one twitch one day, week after 2 twitches etc. It was like somebody pressed the ON switch.

2. I was so tense yesterday becaue of all this I run for 4 km and biked for 35 km, mostly in the city but some also on the hill. I noticed last night when I couldn't sleep good that I had many more twitches in the legs and in the rest of the body also. Is it possible that there could be more because of physical activity? I have never noticed this even if I was more active but I guess a twitch couldn't wake me up and now it can also.

3. The hand tremor is more and more wierd. I am still not 100% but last night I didn't sleep well, not even first 5 hours like usually. The hands didn't tremble... until 5 AM. They seem to tremble only the morning part of the night. That doesn't make any sense, does it? My last 2 fingers were also numb in the morning but after I woke up I could use them again soon without really doing anything. It is like some seizure or what

4. Everybody is conforting me in a sense that I couldn't run 8 km if I had ASL. But ALS starts in one limb and that could be my hand. I guess first few months ALS patient could run if the disease just started.

I am scared to death what will neuro tell me to all this. I only see the death sentance at this moment. I can not tremble every night without something serious, that would go against the law of physic and chemistry.

One question though: I got scared off bcause I read something called "clonus" is associative of ALS. I don't know so good English to understand the term. Can my night tremor be clonus?

[colls22]

Hi Jerry,

I realize that you are in "freak out" mode right now, as I've totally been there. But, you really, really need to try to be logical, and even more than that, you need to try to listen to and believe what we're all telling you.

I have had the same physical symptoms as you, right down to the tremor. Read this, the SAME. And, as far as what all the tests have told me, I'm fine. You realize that the more you worry about all of these things, the worse they will all become, right? That is a trademark of anxiety, and I can see it happening to you.

I cannot be more clear, you DO NOT have ALS. I'm not going to even go into all of the reasons why, it really just boils down to none of your symptoms being symptomatic of the disease. Please trust me, your neurology appointment will be fine! And, you should be so happy that you have it next week, rather than having to wait! Think of the peace of mind that this will bring you so much more quickly!

In case I have not given you this piece of advice before, please take it - GET OFF THE INTERNET SITES. There is SO much misinformation out there, and you will read things that will scare you so much. Getting off of Google was the best thing I ever did. Ask yourself this - what percentage of the time do you come off of a Google search feeling better, versus feeling worse? It was a pretty easy answer for me.

Please let me know how your neurology appointment goes, but I assure you, you're fine and you do not have ALS. I am so sorry that you've had to go down this horrible road.

[jerry2]

Thank you for your words. You also had tremor in the morning when in bed before/after you woke up? Today I found again till 5 AM I am fine. After that the tremors start, but most of the time if I am wide awake they do not, if I am in half sleepy state they do. And in the morning my hands are like they would have thiss buzzing noise, it just feels like it buzzz... I thought nobody has this symptom. Now one hour after I got up the buzz stopped and apart from the pain and twitches I am ok.

I guess you didn't have the painfull 3 fingers and hand, but that probobaly has some logical cause (I go to rheumatologist in 14 days), because tremor is in both hands and twitches are everywhere. If I do some sport (I obviously can not do sport with hands but I can ride bicycle, walk, run), either they are not there or I can not feel them. But when I am at rest they start. In the morning along with tremor I had like 30 fasciculations one there, one the other place, not big ones except on my biceps, but small like electrical surge the small one.

Last time that I had health phobia I thought it is better to now know and to not go to coloscopy. I wated years for nothing. I don't want this to happen now so I am gratefull I will be able to see a neurologist but the terror is intensifying. I do feel like I am walking to my death sentance, can not get rid of the feeling.

But yes, I've read what you wrote and I agree completely with you. Internet has done me such much harm because I am suspectical to ilnesses :-( If I wouldt know about ALS I would at least go to the doc. with calm mind. But as I told you, tremors and first finger twitch that scared me so much were BEFORE I googled, I wsn't scared at that time. It is not like I was googling and then I got tremor. It was there before. But yes, I get the feeling every fasc get's my attention and it the morning it felt like I was thinking today there weren't much and then the started. But I do not know if I can really them now on my own ;-/

[jerry2]

The most "real" problem I have is left hand pain that is spreading to right hand also :-( But left hand pain is worse then ever. I can hardly take anything in my hand as the first 3 fingers hurt when I do. My palm is like on fire, no inflammation is visible (maybe the so visible tendons in middle of the palm are palm inflamation, don't know). Now even the right hand is beginning to hurt like the left one. Yes, some time the left hand last 2 fingers fell a little numb sometimes.

I go to neuro very soon, and I am so scared all this pain/numbness is from ALS. The twitch here and there and tremor of hands at night just tries to confirm my thoughts :-(

[jerry2]

Hi again

I am reporting back from neurologist. I found out out of coincidence I was examined by the neurologist in my country that is an ALS specialist.

He examined me thoroughly. He said my left hand is quite thinner than my right hand, it is borderline if he would call it muscle atrophy or not. But the hand strength is not weakened. He tested me for all reflexes of upper and lower motor neuron, he didn't see any fasciculations (but I did have them but were instant and not in this second he was looking), he didn't see any clinical evidence of what was wrong with me. Night tremor of the hand he could not explain, pain in my hand was not his speciality maybe a rheumatologist will see, but he told me he doesn't see any swollen joints or anything.

He told me he can do EMG if I want and would reassure me, but he found no clinical evidence that something was terribly wrong with me. I may have a ulnar nerve problem in my left hand he told me and if I decide we can do EMG to find out exactly.

He was really very kind. He told me about 5% of the ALS patients are my age or younger.