I am scared to death

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I am scared to death

Postby jerry2 on October 4th, 2011, 4:45 pm

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 am not sure I belong in this exact forum as I have so many problems but the thing that scared me to death was fasciculation so... I am writing after I read for 3 days all possible and impossible topics on various forums.

I have many health problems for 7 years. Up to last week I've had urinary tract infections without infection, stomach problems without anyvisible problem on gastroscopy, big colon problems from constipation, diahhroea, mucus, burning for months etc... Nothing was found on colonoscopy. I have mental problems in terms of health anxiety. I do have health anxiety and I fear cancer the most. Well, not any more, but let's go slowly... I have (had) cancerophobia, I thought I had colon cancer, stomach cancer, bladder cancer...

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...

I do have other problem that brought me to this board (thank you for bearing with me, I wanted to share my whole me, not just one piece). Last 3-4 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 2 night I didn't sleep mostly none because I gor 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. But it is not twitch, because this tremor happens like 3 times a second, it is really more like some kind of rest tremor (Parkinsons :-().

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?

Anyway, to come to the scarry part. 3 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. And google brought me a million links about ALS.

When I first read about ALS it was not some bried text but fir the practitioners how to handle patients, about feeding and decision dilemmas when to turn them off. 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 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. 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. 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 I got more thitches 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 nheurologist. 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.

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 don't have twitches here at the moment and mostly no pain. 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've searched for some answers if any of you have any clue about this:

1. Are twitches in ALS permanent? I mean if I had a twitch and I don't have it for 2 days (maybe tommorow I don't know) is this typical for ALS?
2. Are your hands look equal? My right hand seems... as I told in detail but in one word: thicker in general, thicker palm, more "meat" around thumb... is this worrysome?
3. Anybody have or know what could night tremor mean? It is only at night (till now, never say never...) and I haven't found this info on internet. As I read, if I am correct, tremor is not a ALS sign. And pain in my fingers is not ALS sign? And numbness and tingling in my small finger is not ALS typical sign? This seems to be sensory problems (except for twitching).

I even manyged 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.

Thank you for listening, take care

Jerry

PS - If anybody want's to know, I am 42, male, work on the computer (programming) for half my life.
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Re: I am scared to death

Postby mommylondon on October 4th, 2011, 5:07 pm

Hi Jerry, welcome...I'm usually the one to come on to a newbie post and say things like "no, you are fine, you dont have ALS or you dont have a neuro disease" or something of the like...but you....I am not even sure that you have BFS....This is just my opinion of course but you honestly sound like a HUGE case of SEVERE anxiety/health anxiety.....which is good really if you think about it because there is a better cure rate and more treatments for that then this condition and other neuro issues.....But seriously....I really think anxiety is your only enemy..

You absolutely have not one thing in your story that should have you stressing over ALS, you just dont have it...

Please take care and post again if you have any other questions

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Re: I am scared to death

Postby MissBehavin on October 4th, 2011, 6:36 pm

I'm with mommylondon...I have no idea what you DO have other than sever health anxiety. But I can tell you...you don't have ALS. None of the symptoms you have point in that direction at all.
I'm sorry you're dealing with all this and hope that your Drs. can get to the bottom soon.
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Re: I am scared to death

Postby jerry2 on October 4th, 2011, 11:40 pm

Thanx for the replys. Aren't twitches worrying? Or should they be more or less constant? I do have some problems with pain in hands, I do not think this can be from anxiety, but then you never really know what anxiety does to one, do you. And the X-rays do not lie also about RA I guess, but as I fear ALS now and cancer before that, I really do not take that I have RA. It just doesn't explain my symptoms. I am also not sure if you can get twitches from anxiety or sleep tremor, but anyway. Thank you both for your answers and opinions. I will of course try to treat my anxiety.

Thanx again, I'll wait to see if my twitches subside in a reasonable amount of time. But I found out as you have in your FAQ how does googling for "twitch" turn one into ALS and the one start experiencing more ALS symptoms and even see muscle wasting in hand. If someone told me that 7 years ago I would say this would be impossible. But now I guess... let's say doctors make a mistake and mix some photos or something and tell you you have fatal respiratory ilness. I begin to wonder if you can begin choking or even die even if you don't have one. Because I read (and I didn't believe it), that someone was accidentaly put into large freezer and froze to death. And the next morning they found him, but the freezer was turned OFF and he didn't know it. I mean... can the twitches be purely psychologicall also?

I also had sleeping problems I wake up at 5 in the morning and can not sleep and more. Now I am even afraid to go to sleep because this things start to happen in the night.

Life is really a rollercoaster and you really have no clue what lies ahead. I sympatise with each and every of you, because I found out even one place to twitch can put you out of sleep and sanity. But I think reading the ALS blogs makes me really appreciate life more and the little worries I have in life really seems little this days.

Thank you for your support.
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Re: I am scared to death

Postby TwitchyDoc on October 5th, 2011, 4:59 am

Man, you complain about eyelid and finger twitching to people who experience hundreds of twitches in hour all over the body. Like me , its bicepcs, triceps, abdominal muscle, chest muscles, back ones, calves, thigs....
I do not beleive its even BFS..you are just stressed and maybe have some deficiency caused by that..
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Re: I am scared to death

Postby jerry2 on October 5th, 2011, 5:05 am

Since today I've had great number of twitches on many places (both shoulders, eyelid, fingers, legs) :-( Today I went to a doctor and I got a "green light" to go to rheumatologist, but she didn't want me to go to nheurologist at the moment (in my country general doctor gives a "prescription" and sends you to a specialist, I don't know if it is the same in US).

It is not the twitches alone that I am scared. It is the combination of night tremor in hands, twitches and both hand numbness in the morning :-( Does any of you experience this type of "more than twitches alone" symptoms?

Now the twitches are not constant as the one on the finger was. They go in bursts like 3 seconds in my arm and a little later in my eyelid etc. Are ALS twitches constant?
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Re: I am scared to death

Postby MissBehavin on October 5th, 2011, 6:52 am

I think most of us experience "sensory issues" meaning numbness tingling and other sensations. Your twitches are not ALS. We all experience different types. If it comes and goes and is widespread, meaning all over (although some of us have localized), it is not something nasty. You share some common traits with most of us- number 1 being after learning about ALS your twitches intensified-this tells you the power of the mind and anxiety.
I am not familiar with the health care there, what do you have to do to see a therapist? In my opinion, some behavioral therapy might give you some relief. Tons of people on here have also sought therapy to help them with their anxiety.
Good luck to you!
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Re: I am scared to death

Postby jerry2 on October 5th, 2011, 7:00 am

I have to get a prescription for therapist and wait for 6 - 12 months or I can go to therapy immediately and pay for myself without health care supporting payment.

I plan to go on hypnotherapiy first.

Before I read about ALS I had night tremor in both hands, that didn't scare me very much, I don't know why ;-) Before I read about ALS I have a single twitch from the night and the whole day, almost uninterruptedly - the index finger one. I didn't even know fingers can move on their own before.

THEN I GOT SCARED, the first twitch was not psychological/anxiety and the hand tremor at night is not anxiety I guess. But from then on (I mean after reading about ALS) my twitching went haywire. And I sleep for 4 hours a night this week and I guess that doesn't help either.

I have many sensory wierd sensation as the "tightening" on my left cheek etc... From what I read only twitching can be part of ALS not the other things that are happening to me. So I guess the reason for all this lies elsewhere.

Thank you for your opinion and comfort.
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Re: I am scared to death

Postby chrissi on October 5th, 2011, 7:11 am

Hey Jerry, I also don't think you have "really big" BFS by now. But for the tingling hands, sometimes twitches,parestesias, hurting hands, stiffness and tremors.....well...that's how it has started for several people on here, before the "big twitching" started. So you really need to find a way to calm down your body, before you end up like we...twitching like mad all over the body. But maybe you will develop full-blown BFS, so don't be scrared to death when the twitching spreads...then you would be one of the most typical BFS-sufferers that you just could be. Hopefully you won't get to the point, but IF you do, teak a seat, a cup of tea and a piece of cake and relax here :D
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Re: I am scared to death

Postby jerry2 on October 5th, 2011, 7:24 am

Thanx. I'll wait a while now and if there will be no improvement or things go down the road, I'll go to neurologist for EMG.

PS - I can not get ALS out of my head. I wouldn't want it to happen to my worst enemy :-/ I guess there are other simmilar terrible diseases out there which I luckily don't know about. 10 years ago before Google such terrification could not happen to me.
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Re: I am scared to death

Postby mwagner on October 5th, 2011, 10:39 am

Jerry,

I hear you. Google (while being very useful sometimes in reassuring me that me/my kids do NOT have anything serious) has been my worst enemy in this case. I keep thinking that if I lived 50 years ago, I may not have even thought enough of my twitching to see a doctor!

Hang in there. So many of us have health anxiety as well. I think that's why it's so hard to get it out of our heads. Since I have been twitching, I have been pretty obsessed. And, that is NOT healthy in the least. I want my brain reprogrammed somehow to get it completely out!

Mitra
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Re: I am scared to death

Postby jerry2 on October 6th, 2011, 4:22 pm

Now I found out my pattern. I am not twitching for several hours, but when it starts it is one time in arm, few minutes later in the eyelid, next time in the leg etc... It is like all or nothing. Like if I would be connected to twitch machine or disconnected. Are most of you experience the same? My twitches are mainly in 2-4 times on fast pace, but I got the left arm one today that I could watch and it looked scary, whole arm on about 10cm twitching.

My mind is not at ease in fact I am worse today than I was yesterday :-( As I told you I have left hand pain also, not only the dreaded first time index finger twitch (it started there), because my index finger hurst and my palm also, I can not make a pinch. It is like my tendions hurt...

But I can not get ALS out of my mind, it is like that I suffer from compulsive disorder, I can not concentrate on anything else. I started to get fixated on my hands. After "examination" I found out with terror than my palm muscle on left hand is not as round as on the right. The big muscle is more flat at one point, maybe a barely visible dent that is not on my right hand (right is dominant). I got scared finding this out.

Even bigger problem is when I found out that my palm tendons are very visible and palpable on my left hand if I show hand they are visible. On the right hand not or barely when I make a grip. I mean the 3 tendions that go to the index finger, middle finger and ring finger, , most visible are middle finger one and ring finger.

At first I thought I might have a tendonsynovitus in my palm, some chronic form. The tendons really look to large, like if there were swollen. I have applied ice 3 times today on them but now it is even worse, now my palm feels like it is on fire :-( I don't know what to do, but my stupid head told me this are no tendons swolen (I can really not find ANYTHING on google about swolen visible palm tendons, NOTHING), but rather missing muscle between them because of atrophy. You can guess how I feel now, I had to go running for 1 hour because I couldn't stop crying today. ALS went into my head, tendons seem swollen, but the hand seems to have less muscle on the whole and is thinner so I thought what if this is muscle atrophy. Again nothing on google on that, only atrophies are the thumb one and the between thumb and index finger one. As I told, I fear I have a small dent in my thumb muscle, but it does not seem at all like what I've seen on the net about really big atrophy where I thought half the tissue is missing.

Anyway, I fixated on the missing muscles in palm and I am not even sure if muscle atropy attacks the palm muscles like this so the tendons are so visible. It really seem like tendons are enlarged to me, but there is no such condition on google.

I am testing my muscle strength, this is the only calm place in my mind that everything is fine or at least not deadly. The problem is my thumb and index finger hurt on twitch and some other moves, so it is hard to test. I do feel I have the power to open a glass, but it hurst so I release. Well, I did open it, but then it hurst more becuse I have forced it (this is my 5 month problem with hands and I am seeing a nevrologist soon, whether I have RA or not, X-rays showed some problems, but of course didn't show tendon problems).

All in all, maybe tendons just hurt now and I allways had them so visible (but I doubth that, I would have noticed, it is cleary visible, my wife saw it also). That really makes me wonder. I don't know what my hand looked like 1 month or 6 months ago. If I would have seen this before and I didn't it means I got them instantly. That would suggest inflamation or worsening of my problems in hands I guess, even in ALS I guess there is no such thing as normal hand and the 3 days later 3 dents in plm between tendons). Any ideas here? Am I thinking correctly?

On the other hand, it I didn't notice it, then this could be like this from I don't know how much in past. Still could be ALS I fear.

I can not get an doctor appointment to check for ALS as fast as my head is still able to function (which is just barely at the moment). Problem is I do think both hands should not be equal but very simmilar. On close examination I found out my right dominant hand is noticibly more muscular. Ok it is dominant and my other hand is having pain for months but on the net nobody worries that one hand is different visually, so I guess people have very simmilar hands. Well, it is not like my hands are 100% different, but the visible tendons on one hand really is different and the palm muscle is a litle dented in one place (if I strengthen the muscle there feels no difference).

All in all, that's how I am today. I really fear to go to bed now, because I am not sure what will happen to me. Will there be some finger twitching again, or my little finger will be numb again in the morning (yes, I have pain in first 3 fingers and numbness from elbow to the little finger and ring finger, like I have all the tunnel's at once :-() or the second most dreadfull thing apart from twitching - will I wake up with my hands trembling again. If they would start trembling this past dayss I would say this is my head acting on me, but I have this problem now for a month, where my snity was still preserved (no twitching no ALS fear).

Take care everybody here and thank you for reading my post.
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Re: I am scared to death

Postby bobajojo on October 6th, 2011, 5:02 pm

Jerry,

Take a deep breath. Relax. It is very common for your hands to look different. Mine certainly do. Especially if your dominant hand is more muscular than your other. Look at other people's hands, you'll find that it's very common.

A couple things. The fact that your twitches move around so much, like from your arm to your eyelid is a good sign. That's how bfs works. That's not how als works. In ALS, the vast majority of people will notice weakness first. But not with pain in your tendons, just weakness. Then the muscles start to twitch afterwards. It usually affects one limb first and then spreads from there. It doesn't go from your arm to your eyelid. That's more consistent with an overtaxed nervous system. For me, I have twitches in several muscles going on all day long. Right now, I have them in my back, shoulders, calves, hands, and feet. I get one or two per second and this has been happening for months. So yours sounds like a more mild case, which is good!

The fact that you can not get ALS out of your mind is probably fueling your symptoms. That's very common on these boards. Stress can wreak havoc on your body. Your story doesn't fit ALS. As far as I know, hand tremors and numbness have nothing to do with ALS. My hands are numb every time I wake up! It's clear from your first post that you have pretty severe health anxiety as a lot of us do. There are many, many more likely causes to your problems than ALS. Especially if you're a computer programmer and are on a computer a lot. Just relax. You're going to be fine. Rather than waiting for your neuro appt, you should try to see someone about health anxiety. That will probably help you the most. Take care. -Matt
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Re: I am scared to death

Postby MissBehavin on October 6th, 2011, 6:32 pm

DID YOU SAY YOU WENT RUNNING FOR 1 HOUR? Someone with ALS can't run a couple feet, let alone 1 hour. Stop looking and read dents and atrophy sticky on this forum.
I can admit that I to did the checking thing in the beginning and I can tell you, it won't get you anywhere but stuck in your head. I tried walking downstairs backwards-whoever thought of that was crazy-I almost fell down the stairs :oops: . I measured, I compared, guess what....are bodies are not symmetrical.
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Re: I am scared to death

Postby jerry2 on October 7th, 2011, 12:10 am

This night I found out 2 other scary things. First of all, the tremor, internal shaking or I don't know how to tell it. It really happens only on the left arm not the right. So something is not right in this arm, is it dying off? :-( Because the WORST twitches, with this I mean the ones that lasted more than few seconds and were visable occured first night between my thumb and index finger and now tonight they arreared on my shoulder, a little below it on my inner side of the same hand. Other twitches that I have are not so strong, I am not sure if I don't only feel the single twitch or pulse. Well no, the eyelid did really twitch yesterday evening, I could see that in the mirror. And my other hand is sometimes twitching a little on the same place as the first arm.

So the cronology of my problems is:

1. Hard time pinching and using the hand because of PAIN for 5 months, only that. One day worse, one day better, but mostly just the same, same movements made pain that was mostly in the first 3 fingers.

2. I started having this hand shaking in the night for 4 weeks. Only at night, come and go, usually they are for about 10 seconds and then dissapear. Maybe they are small twitches but they really feel more like gentle tremor in hands, but it could be the nerve tremble not a musle one, my hand feels wierd with it. As I told, they last some 10 seconds, that is why I fear they can be twitches but twitches are more on one muscle group, right, not whole arm trembling. It seems (not sure yet) when I wake up becuse of this and move my hand that is when it stops but if I do not move it it stops anyway. I am not sure if this is going on all night long, because I sleep a few hours.

3. Muscle of the index finger started twitching first, then arm muscle (same nerve I guess, didn't look yet) and yes, eyelid muscle and other arm muscle and yes, single twitches on some other parts of the body (face, leg, body).

4. I do have some last two finger numbness and tingling every few days when I wake up, not every day. And some wierd feelings in my hand.

5. I found out I could be having muscle wasting in my left hand where my tendons are. Or to admit, thy may be swollen. They hurt a big last 2 days.

Is this my hand dying off and starting to go to my other hand, isn't that how ALS work? :-( Of course I could run for 1 hour, my legs are ok. Isn't that how ALS work, first one linb then the next?
I don't feel some weakness in my left arm or hand yet. I don't have so much power in it on some moves like pinching and opening of the glasses, because the pain comes.

Is pain in fingers predecending in ALS before twitching or this tremble at night. Seems I tremble when I lay still, that is the only difference I see between day and night.

I woke up in terror today.
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Re: I am scared to death

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