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inamaum

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Hi, again.;)
I posted here few times and I'm currently waiting for my neuro appointment next week.
(FYI, normal clinical exam, clean EMG 8mon. ago, another normal clinical exam two weeks ago. I was told I do not have any neurological symptoms.) I am not here to ask
if I have als or not, although I have new/changing symptoms. My symptoms( a lot
of percieved weakness in two limbs with twitching) were gone for a month and a half since this horrible disease doesn't come and go, now I am trying to look at this more objectively.

What concerns me now is I keep on waking up at night with paralized right arm. no pain, no loss of sense, I don't notice it until I roll over. I'm pretty sure this is the real
weakness with MND. I massage it and I regain my strenths in a couple of minutes. This happened two months ago in the middle of night. First I thought it was poor blood circulation, but I sleep on my left side, and this happens to my right arm. no tingling.
So far this happened 5 times and since then my right arm remains heavy/fatigued all the time. I sleep on my back now, but this still happens whenever it wants. I did mention it to my neuro 2weeks ago, but since I don't have any clinical weakness, he didn't really pay attention to it.

What could it be? it's just my nerve signal got cut off? pinched nerve? is that why I have this fatigued arm all the time? I know this is real silly I have noticed a very tiny dent on top of my right hand between the 4th and 5th finger. I should have significant weakness(not percieved) before a dent shows up, right? anybony experienced this? Is this just my sleeping position problem? I'm grateful for any information. Thank you.
 

Alyoop

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DX UMND/PLS
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The weakness with ALS would not come and go.it would be present all the time. If you were lying on a nerve as we all do from time to time, then you would have sensory issues like numbness and pins and needles. Your tests are fine so just try not to focus on it. You can always get a second opinion or go back to the dr in a few months if things change. Meanwhile enjoy life without worrying.
 

inamaum

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wa
thank you for your reply.
Although all my old symptoms came back along with other new symptoms, I am more calm than I was many months ago. I have learned to ignore certain symptoms. I guess it's all about "what if this is real slow progression and rare form of als...?" I can do just about everything with my arm and leg, but my arm is always heavy and tired. A mug of water's heavy in my right hand, but I can lift it up and hold it. I was wondering if this has to do with the paralyzed arm that I wake up with at nights. If I don't have tingling and pain with it, then it's not a nerve problem? don't we get tingling feeling when the blood circulation gets cut off? Gosh, I get shortness of breath more often I hope it's just anxiety. symptoms for a year now, it's been like I'm having a real bad dream.
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
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1,782
Reason
DX UMND/PLS
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The tingling you get is from a pinched nerve, rather then blood supply. I lie on my arms and squash my ulnar nerve every night. It's dead in the morning. It can eventually cause permanent nerve:damage if it goes on for long periods often,a bit like, bending an electrical cord. The damage if any would be detected on emg. I understand the anxiety, it is horrible, it causes it's own set of problems. If I concentrate on my tired arms when hanging out washing, it annoys me. If I have my thoughts elsewhere like watching my dogs play, then I don't notice. This has taught me to keep busy and stop focussing on symptoms, just enjoying life. It has made me healthier and happier. If I focus on my illness then I get convinced that I am getting worse. Give it a go, it may help

Aly
 

inamaum

New member
Joined
Sep 22, 2010
Messages
7
Reason
Learn about ALS
Country
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wa
HELLO,
just a little update on me, JUST IN CASE somebody's actually following my stories...
I went to see my neuro this week. After a normal clinical exam he said all my tests were
fine and I maybe having a conversion disorder.( A condition where a patient present with neurological symptoms including a loss of muscle control, but no neurological explanation is possible) Maybe you guys already know about it, but I've never heard of it before. I googled it and found a conversion disorder forum. Apparently there are pple out there living with real physical disability but are not dying. It seems like it has a lot to do with stress and our anxiety issue. It kinda explains why I've been feeling this way. A year ago, I was under a lot of stress, much more than a 90lbs of a small woman could take. I had to move to a different place to just avoid all that bad things around me. 10days later, I started to experience all kinds of weird neurological symptoms.( tingling, weakness and weak feeling, twitching, off balance feeling, limbs heaviness, lump in my throat feeling, flashlights in my eyes, slight slurring, finger stiffness,upper arm and shoulder pain, night time arm paralysis) I still have most of these symptoms, still scared, but after I read those posts from that forum, I decided that it's about time I agreed with my doctor. Somthing's just cannot be explained especially if it has to do with our mind. I think I should let it go now and finally live my life again. I feel so sorry for the pple who have this disease. Personally I think this is the most horrible disease on earth. I am going to pray for them and and never forget this experience. It made me realize that I am nothing without my family and their love. When you're sick, they will continue to love you and take care of you. A fancy car, a big house, all those pretty clothes that I like to get someday mean nothing to me now. I have learnt a lot from this experience. I just want to live happily and see my daughter grow happy and healthy. Just like me, I hope
a lot of pple here who don't know what's going on with their body could trust their doctors and tests and eccept it and move on. I only live once and every minute will never be wasted again. THANK YOU.
 
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