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Wallace

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Hey everyone, Im new member and very worried about my symptoms.
I've been twitching almost 2 years now and back then I had 3 neuroexams, head MRI and normal enmg from my left hand and back.
I've been feeling very good, but now.. Couple weeks ago I start having pain in my hand. Pain is in my neck, shoulder, shoulder blade, upper arm and also in my elbow. Sometimes I have shooting pain in my ulnar fingers and burning feeling in hand. My shoulder and arm feels weak, gets fatigued. I can lift my hand up and dry my hair, but cos im a twitcher, and I read that Erica had these kind of symptoms first, I'm REALLY worried. I've tried osteopathic therapy, PT and having painkillers all the time, not helping. I know it's not typical to have twitching first but.. Who knows? Please give me opinions :(

Xx
 

Wallace

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Oh yes and left hand is in pain. 2 yrs ago they had enmg for the hand cos of twitching and having weak fingers, now my fingers r working all fine..
 

MaxEidswick

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you might give this sticky at the top of the forum a good read. I believe, in general, pain is a good sign it is not ALS related.
 

Wallace

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Thank you Max. Im also curious does *** act so fast in body, just in few weeks you can notice weakness? I wish u the best. And I'm doing my best not to be anxious, but at this time I feel terrible..

Xx
 

MaxEidswick

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>Thank you Max. Im also curious does *** act so fast in body

like a snowflake everyone is different .... here is my standard hotkey in case you fid something hhelpful:

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

Atsugi

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Wallace, you have not described ALS. You described a painful neuropathy. Fortunately, those are rarely fatal.
You don't have ALS.
 

Blondrea

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Max, could you please let me know what the stickies are? Sorry, I don't know. Thank you!
 

Blondrea

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Max, sorry, never mind. I realize the sticky you are referring to is the "read this first" information. Very valuable. Thank you!
 

Wallace

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I'm a bit confused. I went to neuro, no marks of UMN damage, my babinski didn't react nothing and still in pain of my upper back and hand in bicep. And when I wake up, my muscles feel really stiff and when I yawn, my shoulders shake like hell. I don't think this is neurophatic pain :(
 

Wallace

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And I'm losing my hands power, all these just in 3-4 weeks. Is it possible?
 

dalvin

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Wallace, you weren't paying attention. You don't have ALS. Go to a general health forum to discus your symptoms. This is an mnd only forum
 

Nikki J

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What Dalvin said. Your symptoms don't sound like ALS you report an exam that is not ALS. You have no reason to be here. Your neurologist must have given some opinion. Such as you are fine, or you need to see a different kind of doctor ( orthopedics maybe?) or I think you might have x ( condition other than ALS) and we will do test/ try treatment. Follow their advice We can't help you here
 

skipper66

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Wallace: Like everyone else said Wallace. You don't have ALS symptoms. So, you no longer belong hear since we already answered your questions as far as were qualified. Good luck to you in finding your answers elsewhere.
 

Wallace

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Prove me that I'm wrong.

So, twitching 2 yrs and I've been feeling just awesome. 3-4 weeks ago I was healthy young woman, and suddenly I had this pain on my back and shoulder. Pain moved away and weakness came in. I just can't believe this! I had neuro exam, nothing to worry about. No UMN signs, neg babinski and Hoffman, no brisk reflexes. Winged scapula, but it's been there many years. Now, I can't lift my hand up without shaking and that burning sensation on my shoulder and back. My whole back is cramping. Yesterday I went for swimming, and I felt how my shoulder blade moved on my back without control.

I have read the stickies, and I think too it's a astronomic odds to have this at 26 yrs old and shoulder onset, my fingers works just fine. Burning feeling points away, but if my backs muscles r dying, I believe that all the other muscles have to work like hell and that would explain the burning pain. No nerve pain anymore, just weakness. I hope I'm so f...ng wrong and just hypochondriac but right now all I do is cry and worry everyday, Cos my hands weakness is progressin.. In 3 weeks! So if this happens so fast, I will die in one year?

I know u have to deal with anxious people everyday but I see that my family suffers this too and I'm desperate. I wish it would be anything else cos I'm a single mom for a young child but what else could it be with these symptoms? I had BFS diagnosed 2 years ago and it's not typical to have progressing weakness IN BACK /SHOULDER after this time.

I just wanna scream right now..
 

Atsugi

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"I wish it would be anything else cos I'm a single mom for a young child but what else could it be with these symptoms?"
ALS doesn't begin in the back. It begins in the feet and progresses upward, or it begins in the tongue and progresses downward.

Wallace, it can be many other things. We know ALS very well. You don't have ALS.
We don't know other diseases. We aren't doctors. You need a doctor.

You are taking up the time and energy of paralyzed people. Please don't post here any more.
 
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