Learning Differences: My Story

Thanx, but the ALS patients I found tell that twitches preceeds and weaknes or atrophy I just read a blog of someone with ALS and his first signs were like mine (( Twitching in left shoulder and then between thumb and index finger :-/ Mine started just vice versa.But if I am lucky to live... if the twitching stops in the next days, weeks... is it safe to assume this is not ALS? I know if it doesn't stop no one knows.But twitching really seems to be the first sign from the ones that have it.And I think I'll try to force not to read anything about ALS no more.

Hi againIt's me again. I've had the worst day today.I woke at 4am because my left hand (the "sick" one) middle finger couldn't move. I am not sure did I now sense it or just couldn't move it (I think I sensed it, because I know it was folder and I couldn't open it. It all happened so fast in few seconds it was back to normal. But I thought that I will be dead by morning. Managed to fall asleep again somehow hours later and woke up with my small and index finger tingling. Few moves and it was better. I fell asleep again and I woke up with "normal" fingers but trembling. This time I saw the pattern of trembling. Both hands and in between, so it means upper of the rib bone below neck. This part of the body only. After waking up didn't come back again.But whole day I am feeling like on electricity, I can not describe the feeling. Been twitching, yes, more with some micro one time twitches but lot's of them and wierd like some buzzing feeling in my arms and hands mostly all day. Like half tingling, I can not describe. And both hands hurt me now (fingers and to elbow) like tendon pain I guess. Maybe cramps. I don't know. It is wierd and terrifying. Am I dying. Before 7 days I had some pain in my hands and I was a little trembling at night in my hands but that's it. One week later I feel like half paralised. I am not really paralised (except 3 seconds in the night) but I feel this was and I fear what now the night will bring me. WHen I sit my legs fell asleep to much easily, they never did so fast.Is this ALS? In a week I went to electricity all overy my body with twitching and both hands numbness, tingling problems? Is that possible? Can anybody of you relate to this post? Am I going mad? Or am I dying and my neurons feel like electric storm because they are dying? I know you have twitches, but this kind of things? They are more than just twitches now. And every night bring me something worse, I hope to be able to feel my arm tommorow, really I went in terror to the general doctor (it is saturday, my doctor didn't work I went to the general "ER", king of), and I told the doctor what is this and if she things I will live till monday (yes, it is not only ALS any more, it is now a fear I'll have a stroke or something this days, my left half of face is ... doesn't feel right, is that a stroke coming). Doctor was kind and listening and told me this is no stroke to her. She told me she didn't see any ALS patient in her 1 year career, but I didn't think she suspected ALS). She frankly told me this is all wierd. It could be anything or nothing she says. The symptoms are so different that do not point to any direction because each is pointing the other way. She gave me Helix, it is a mild sedative and I just took one (before going to try to sleep). I am sleep deprivated because if I sleep it is bad sleep and waking up with something missing every day - my sanity and some new thing in my body).I try to think that even ALS can not go so fast. But LAS is not the only deadly thing when it comes to neurons and I really think I have a nerve and something problem. And this is where medicine really have the least clue in human body.If anybody can relate to anything I wrote today, I'll be here a little while. If I am alive I write again tommorow.YoursJerryPS - I did manage to go out with my son and to go with bicycle to the "pizza hut" with him, it was sunny but cold. Whole day I could feel this wierd feeling of electricity in my body, falling asleep in my legs and just too much tingling over my arms, but I managed to survive the day somehow, it is the night that destroys me I think. Thank you for listening to my whinings.

Oh yes, I found out if I extend my hand and make fingers apart to have force in hand, my last two fingers on both hands are trembling considerably. If I lighten the extension this is gone. And no, if you read my upper post you would see this is the least of my problems...

Good Lord Jerry! Take a deep breath, then take another, and another....See your still alive and nothing bad is going to happen. You need to calm down before you do cause yourself to have a heart attack. All your having is what many of us have gone thru, its nothing more than an aggrovation. Don't let fear controll your life like this any longer. It's crazy! Why would you be dead tomorrow? Your the worse case of anxiety I have ever saw on here, I thought I was bad. Panic like this will make your symptoms 100 times worse so stop it, now! You need to snap out of it and listen to yourself. Do you have any anxiety medicine you can take to help with this, because that is all it is, ANXIETY!

I have Helex, it is sedative.Breeding doesn't help. I am still alive, but my neurons ... I don't know what is going on with them. Not able to move a finger. You really think anxiety could numb your finger?

Alot of things can numb your finger, you said it was ok now. AL@ does work that way, once its gone its gone. It would not work at all, EVER again. Just the way it is..The more you panic the worse this crap gets. Stop going to the worst case scenario when something new pops up. That is where people get stuck, and I did the same thing. You are going way overboard. Stop reading things about AL@ because you do not have that. Read into anxiety and google it's symptoms.

Thanx! I have read faq here... I still don't get the difference between twitch and fasciculation. First seems a people word and the latter seems medical word. My arm twitch that is the most lasting is like this: (not, that is not me!) Is that a twitch and fasciculation?Yes, everyday I have anew symptom. I couldn't move my finger for 5 seconds when I woke up today, I can move it now yes. I have hard time holding things (pinch grip) with left hand because of the finger pain but that is a 5 months old story, I do not know if it is connected to this one at all.It is hard to believe my mind could be making new twitches because of anxiety. Tha seems so... physics, law of electricity. When I did EMG or how it is called the electrodes you put with current in it on some muscles to stimulate them, made same kind of wierd twitches/fasciculations.

To me a twitch and a fasiculation is the same thing. My doctors call them fasiculations and I call them twitches. I never heard the word fasiculation untill my doc ordered blood work for me and had it printed on the order.Maybe somebody more educated can chime in if I am wrong, after all I am just a blue belt in google-fu, lots of second and third degree black belts on here who have mastered the art....

I thought a twitch was when you finger moves without you noticing the muscle group in the upper side has a "storm", just a tick of a finger and the fasciculation is when you see this, electrical convulsion of the muscle. To my finger it moved to the right, but I could see the muscle in spasm between my thumb and index finger. In chrissy's video I was her fingers severly moving but I couldn't see the muscle groups before fingers stretching so I maybe thought this were like ticks (like if someone unvoluntarely moves a head, they are caled something like myotones (I can not remember the word), they happen before we dive into sleep, whole limb moves. Fasciculation is more dangerous (in a way that it can show to ilness) because the finger not only moves with whole finger muscle but you can see the one muscle group that triggers a move to the right or left).But I guess you do have also simmilar twitches to the video I posted link? This is fasciculation.My night went "the normal way", but nothing new and it could be worse. Today I didn't have stucked finger or numbness in the morning. But twitches in my left arm (severe at night) and the tremble in both hands between my slleping and waking up and sleeping again. For test I did lay still after I woke up for 30 minutes but the trembling didn't occur. To try to be funny once, I hope this is muscle doing the workout at night not the muscle dying.YoursJerry

Do any of your have twitches at night? Or only during day? I don't know while sleeping of course, but we all wke up for some moments in the night. I guess ALS twitches are also at night and mine are for sure, the first one, the "dreaded index finger twitch" woke me up in fact. Is this also in BFS or not?Another symptom that I have during the day is this wierd tingling in hands and legs. Sometimes they feel like if they just waked up from sleep, it is not so severe but it feels like shaking or a neurologicall buzz in the nads, can anybody relate to that? And my legs keeps falling asleep during the day no metter in which position I sleep. Like my nerves did became 1000% more sensitive than a week ago It is not only twitching at all.

Jerry, you really need to calm down badly. I had wild finger twitches in the beginning at night and yes, they made me wake up. I had fingers moving around, jerkinf, sometimes ma whole arm would jerk, sometimes only the hand, and very often the feet at the ancles when i would relax my feet. I have buzzing and weird tingling in my hands, in my right arm and my right leg. In the beginning of this my arms would fall asleep the moment I would lay down in bed and many times during the day, also my legs (till today). The thing in my vdeo is a finger tremor and no twitching. I have lots of tremors since this started, sometimes as a kind of vibration, sometimes as really shaky parts of my body. I have the same kind of hand pain as you, it feels a bit crampy and affects many fingers and especially the area from pinky to ellbow. A LOT of peoplehere have muscles tightening up in these regions and pain. I had the elictricty all-over-thing too. To me it seems that you are unfortunately really developing my kind of symptoms, I started too with the whole stuff within just a few days after I had stifness and hand pain, then suddenly all that weird stuff happened to my body. I almost died from anxiety....my legs would feel so weak that I could hardly walk, and well...you saw the video of my fingers. And now relax........it is NOT typical for ALS to have twitches before weakness, it'sthe other way round, it is NOT typical for ALS to have tremors until you have lost a very good and surely noticeable portion of muscle strength , and there are NO tremors at rest or vibrations or weird finger movements in ALS. Pain occurs in late stages in ALS, it usually derives from the spasticity and inability to move a body part. Not at all the kind of pain any one here has. Sensory stuff rules out ALS. Even if all hints would point to ALS in a patient , a doctor would check over all results if the patient would in early stages talk of sensory stuff, because ALS does NOT affect sensory nerves. Finger stiffness is very common on this board, especially in people with pain. And here I want to make a link to fibromyalgia, because there's a big overlapping part in these diseases, BFS, CFS and fibromyalgia. And finger stiffness and pain is very common for fibro, as well as twitching and perceived weakness. These people also often suffer from temors. So maybe you want to google once more for Fibromyalgia tender points, I guess there will be a lot of them positive in your upper body. At the start of this all my upper body tender points were positive but not the lower parts, when I had no leg pain. In the meantime the pain has spread all over the body and now also my lower body trigger points are positive (tested today by a Dr-friend I met and talked to abuot it.....). So you absolutely want to google....just stay off ALS boards, google BFS, google Fibromyalgia stuff because I think these are the things that you are just going through, NOT ALS.

Thank you very much again Chrissy that you took the time for me...It is not just because it is happening to me, if my friend would tell me my story I would definitely say something bad is happening to him. I mean, it seems like there is something really bad with neurons.I am developing something yes and it is happening very fast, now it is 8 days and have more and more symptoms. My latest symptom is daily this time. Today I have a kind of buzzing in my hands and legs. Like a sensory noise. Hard to explain, but when my hand is still I should not feel it. But I feel this electricity that is going on one side of my arm (usually the little finger side) and then my other hand is like this and the thing I told few days ago is not true any more. My legs are affected with this also. No matter how I sit, my leg fally asleep very soon, because even if I don't sit, I feel such vibration (sensory one) in legs. Sometimes it twitches along, sometimes not.I still fear ALS and am stuck to this thought for now, but the reasonable me (what's left of him anyway), doesn't see a motor problem of neurons ONLY, but now both, the sensory and motor neurons are included (I am not a medical man, but I do understand how body should work, I went to natural science/mathematics school, we had a lot of body work and I rather not say what I have a degree at (and not, it is not medical one, but close). I would definitely say night tremor and twitches are motor neuron problems and the tingling/numbness/wierd electrical feelings one are sensory problems. Now I rather not speculate what make all your neurons go crazy in a week (ok, trembling at night did last 4 weeks prior but everything else is 8 days old).My hands are tingling too soon, it is same feeling as if my limb went asleep and is waking, just not so severe, but a constant buzz. I thought of some spine disc nerve entrapement (since it is on both my hands now) but now it is on my legs also I have so say my functions like sound, speech, swallowing, vision, coordination, stability are for now not affected it doesn't look like brain tumor to me. Maybe a spine tumor, but I rather not google it It seems to be going on so fast it is even more scary to me.I fear tomorrow I may wake up and my whole limb would be unable to move. I don't know.Chrissi, I don't think we have similar hand pain. My numbness is now everywhere, usually in my little and ring finger, but as told, my middle finger was numb ... But the pain is mostly in the first three fingers (median nerve). I had X-rays of my hands found enlarged synovites membranes but in the joint that never hurt me. In the low spine they found some erosion of the bone and they suspect RA or Spondyloarthritis. Now I wait rheumatologist. RA is not a nice disease and I hope the pictures are wrong, but at least from the ALS perspective you can still live with hope for quite some time in most cases.Anyway, I don't think my finger pain that I have for 5 months is from joints anyway. Passive movement in my joints doesn't hurt except middle finger where it hurst for 2 years now (I can not make a cracking sound, if you know what I mean, because it is so stiff). The pain when I press with index finger or make a thumb grip to open jar is not felt in joint but below it, like from some ligaments / tendon pain. Wierd and bad, because I have very hard time using left hand (arm is fine), now right hand has more and more same problem but is not so bad for now.My left lower jaw has also same sensory problem like my limbs, it feels wierd, but looking at me you would not notice the difference.The tremor at night is not internal, you can feel it for real. Could this tremor be fasciculations also? I hope not, that would mean atrophy... Because this tremor is rest tremor and Chrissi I just hope you are right and ALS patients do not have night rest tremor. It has around 3 "beats" per seconds, so it really sounds to me like tremor not fasciculations, it is involving whole limb and the fasc does not produce so "nice regular beats" like the tremor I have does. I again hope this is tremor (MS, Parkinsons?!) not twitches.I have some fasc at night when I turn on my left shoulder it begins twitching on the same muscle as allways. I have some 10 spots with this tweitches they are not random I think. But today I have some electric feeling in my back also?! How wierd is that? Sometimes I am not sure if I have tingling, electrical feeling, tremor or twitch when it happens Doctor told me I will probobaly loose some tremor at night with sedative but I didn't. But I did (with many wakeups and waiting for tremor to go away) manage to sleep for 8 hours yesterday but today I was sooooo sleeapppy whole day. Maybe from the sedative I took yesterday but I doubt it. I think such high panic and anxiety really is lot of work for the body and on top of that I have problems with being alone or at home, I rather walk or run or do something this days, because it is worst when I am not doing anything.My muscles felt week today, but this can not be clinical weakness I was fine 8 days ago, I ran 12 km 3 days ago. Maybe my muscles are tired if they have tremor at night, don't know.So christinasgirl123 you think we can be "twitch brother and sister" or what ? BTW: Thanx for the fibromyalgia link, last seven years I thought some times I had fibro. I have to admit, in last 7 years I've had so much problems, this is just the first time with neuro problems .-( I had urinary track problems like infection with no clinical infection, I've had stomach problem, I've had colon problems, I have skin problems (dermatitis), I had joint problems (my shoulder would hurt me for 3 years for no reason etc.). I remember even about 5 years ago I did have on my right hand not left, some wierd feelin in the index finger and numbness and I went to EMG, I remember I was not scared (I didn't know of ALS) but it hurt so bad... They found some "noise" in my little finger and they told it is from the spine Cx-Cy, can't remember, but that was it. It was gone some time later. It is similar to today tingling/numbness, but now it is widespread and 10 times stronger. And yes, I did fear I had colon cancer! And no, this time it is worse, much worse, I never took sedative before yesterday in my life But this time I am really loosing my sanity.

I would like to add my input to this also,I've been having on and off pains in the joints of my fingers (especially thumbs) for about 5 years, i checked and didn't amount to anything, i also had spontaneous pain in my left shoulder for 2 years until i actually got an mri and it showed a detached labrum, a common accident-related injury although i don't remember any traumatic experience that led to this, this was waay before bfs, my advice is to get checked for vitamin D and antinuclear antibodies by a rheumatologist, if you're gonna be clear you got nothing to worry about, especially not ALS, there's no link between als and joint pains... I also had the urinary tract pain last year without infection, do you have dry eyes or mouth?

Thanx for the tip. I have rheumatologist in 2 weeks so I'll tell him also about my nerve problem. I have very little joint pain (so I think) more like a tendon pain or something.The worst I have is the hands tremor at night even when it wakes me up from sleep it is still there on and off. In the morning not any more (till now).I feel tired and all my muscles are in pain, I don't think this could be mucle weakness showing, it was 8 days ago that this had hit me Dry eyes and mouth no. I do have red eyes and pain sometimes, but they've checked me for dry eyes and I have too much tears they told me not to little...

Yes Jerry, in me it isalso the tendons, especially at the pointswhere the tendons are close to the joints. Typical fibro

My tendons are mostly visible in the middle of the palm.

I am wondering about this internal or external tremors of mine. This was my first sign 4 weeks before other signs developed. I am paying close attention now. It seems they either do not happen in the first 5 hours of my sleep or it doesn't wake me up because I sleep more tight. But hen it wakes me from sleep, it is on both hands, single hand or both hands + chest. The most is felt on ma hand less on my arm. I do not really know if it is seen, it is felt by me and it is clearly palpable by other hand (wen one hand is affected only else I can not test). It is like slight tremor.I am beginning to fear what if this are some micro fasciculations that are eating my muscles away? ;-( Can fascs mimic like some tremor? I feel the fasc more sudden, random, one point in the body and I feel this like a motoric buzz in my hands, the "beat" is more regular like 3 times a second (I am not sure, didn't take stopwatch of course).Now if anybody knows, are this not some micro fasciculations? If I knew what that was I would be closer to know what is wrong as this were apart from my hands pain which may or may not even be connected, the first sign and they happen every night for 4 weeks without mercy.Now to be honest, I read about micro fascs in ALS patients but I didn't read anywhere that ALS would apart from twitches show in this way with such rest tremor. And rest tremor it is, if I strentghen the hand it dissapears and when I release it it comes back immediately. AT NIGHT. Even if I am not asleep because I am testing this. Today I didn't sleep for 30 minutes and the tremor comes and goes. So it is not necessary for me to sleep at all! But after I am fully awake in the morning and feel them they go away like a bad dream.But I do hovever experience some motoric or sensoric buzz (really don't know what is motoric and what sensoric any more), I mean my thumb had it a few minutes back, it is like thingling or something, I pressed other hand to my thumb to see if this is the same kind of rest tremor I have. Didn't show like trembling during the day. But I really had hard time to know if this was sensoric "buzz" or it was motoric slight "buzz" with micro shaking. I am so confused And I know this points more to MS than ALS I guess. MS is like 0 and ALS is like 5 times 0, still zero. I know MS is a "better" disease but only by so much and only because ALS is so fatal

No, it is impossible to feel fibrillations in muscles, just because the affected muscle parts are so small they can only be seen under microscope and cannot lead to any movement any time. To cause some kind of a tremor, the muscle movements follow a certain pattern all together and some kind of "working together" of different muscle groups, some kind of weird "harmony". Fasciculations in ALS are anything but a harmony, this is just an chaotic mess of single signals of dying muscles.

Thanx christinasgirl123. I don't know exactly what kind of thing is happening to me at night because I am sleepy, but they seem more regular not random, like the hand would be in a great fatigue. I guess ASL patients do not wake at night with trembling hands as their primary symptom.I have to correct myself, I don't even want to read everything about MS and the quality of life, but it seemes at least the life expectancy is not too bad in the last years, it is on average length - 7 years but of course it is the quality that can be severly impared. So out od deadly diseases I guess most would take MS instead of ALS if one would be able to choose.

You don't have any of these diseases You have BFS and health anxiety!