I am scared to death

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Re: I am scared to death

Postby chrissi on October 9th, 2011, 11:35 am

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 fibro 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 Fibro stuff because I think these are the things that you are just going through, NOT ALS.
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Re: I am scared to death

Postby jerry2 on October 9th, 2011, 12:20 pm

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 chrissi 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.
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Re: I am scared to death

Postby kstoruk on October 10th, 2011, 7:41 am

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?
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 7:45 am

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...
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Re: I am scared to death

Postby chrissi on October 10th, 2011, 8:19 am

Yes Jerry, in me it isalso the tendons, especially at the pointswhere the tendons are close to the joints. Typical fibro
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 8:30 am

My tendons are mostly visible in the middle of the palm.
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 9:51 am

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 :-(
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Re: I am scared to death

Postby chrissi on October 10th, 2011, 10:08 am

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.
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 10:25 am

Thanx chrissi. 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.
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Re: I am scared to death

Postby chrissi on October 10th, 2011, 10:40 am

You don't have any of these diseases :wink: You have BFS and health anxiety!
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 11:26 am

chrissi: I WISH you are right! Really. I am not religious, but I believe in the power of the universe that is always try to make things right streaming toward balance. And it gives me one more chance to make my life right with the things I messed up and it really made a good point with "showing me" what are real problems with real diseases. I do think this effect will change my life in the future and I I really got the point this time I think of what to change in my life for good. I hope this was the "universe's" only point to make and not give me this dreadfull disseases but rather another chance.
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 11:50 am

I really don't feel any better finding out doctors say BFS is a RARE disease, very rare. It is not logical to get some rare disease. If it is rare disease, ALS is also so... I know here are 4000 members but this is from all over the world. This doesn't mean many people have this problem. Being a rare disease makes it much less likely that I have it :-(((((
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Re: I am scared to death

Postby chrissi on October 10th, 2011, 12:01 pm

it is not rare!!! there are most likely millions of people there that are twitching but don't care about it. Most people with fibro (quite common) twitch too, menopausal women twitch like hell and are in pain, hypermobile people twitch like mad, the world is full of twitchers! Only the diagnosis BFS is not so common bevcause many doctors don't know it.
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Re: I am scared to death

Postby jerry2 on October 10th, 2011, 12:23 pm

I hope you are right. Because if I can not believe in ALS because it is so rare and I heard a doctor on youtube say this is RARE DISEASE it probobally also mean I can not have it. And I searched in our language about twitching and could not find much information. Like nobody is having this problem. I had like 20 twitches in 5 minutes, they are very small mostly, like a bigger felt pulse, I wonder how much did I have before.

I think I read wrong thing again because I felt into a relaps now I think. I am just listening to my body and it is full of buzz, little muscles twitcks, electricity goes through my thumb, I don't know now what is twitching and what is buzzing and what is the sensory feeling any more.

Yes, I do believe I could loose my sanity over this. I am so alert to every twitch, even pulse beat, every pin, every slight tremor etc. in my body it hurts my mind so badddd :cry:

PS - They did a survey in Netherlands about how many people do experience twitches and cramps and they found out there are not much that experience this things except in the eyelid from time to time, this is considering often among population.

On top of that I've had many fasc small ones I couldn't even see just felt under my left thumb, where I think I might have atrophy as the skin is not so tight as on the other thumb. Aggggghhhh....
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Re: I am scared to death

Postby trajon_34 on October 10th, 2011, 1:00 pm

My neuro never mentioned this being a "rare" syndrome, and he infact has multiple patients with BFS currently. And this is in a smaller town of less than 100K people and multiple neuros to choose from. If you step back and call it PNH since it shares so many symptoms with things like Fibro, then it is actually much more common.

I hope this doesn't sound harsh but you are fairly misinformed about this area and it is evident based on what you have said or suggested. I'd really just calm down and take the advice of the people on this forum
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Re: I am scared to death

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