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I am worried that it could be ALS, but my EMG didn't show it. It showed polyneuropathy in my leg, but my weakness is in my arms.
The Neurologist said he is 99% sure it is not ALS, but ........."the fasciculations are troubling".

I was fine with the idea that my back was causing my weakness but the Orthopedic Surgeon said that was not the case.
That is why I don't know where to turn. I don't want to assume it is ALS, but something is very wrong.
I just don't know what it is?
 
Your neuro & your ortho. should have a conversation. There may be something each of them overlooked.
 
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Maybe it is not als but something else. I have mitochondrial myopathy. Maybe they just haven't dug far enough yet. Has your neuro mentioned anything about more tests?
 
yes have a look at mitochondria dysfunction - accounts for weakness and strange bp temperature pulse issues too
 
Thanks. I will look up more information about it.

My neurologist wants to see me again (next month).
My wife thinks I should just wait and see what develops next, but I am missing out on life.
The foot that constantly twitches has a noticeable dent in it now just below my big toe.

I'm leaning towards my back being the culprit but the ortho said it would not cause bilateral arm weakness or fasciculations (which are everywhere).

I'm just frustrated and a bit (a lot) scared now that I have chin weakness as well.

I keep telling myself how rare ALS is, but it doesn't help once you've crossed over to the anxiety stage.

I was told that the neuro was 99% sure it wasn't ALS. But he thought it was my back and now the ortho says no. That's why I am back here.

I can still walk fine, use my arms and do most everything I could before but I notice that open pill bottles differently, using my palm instead of fingers. I use my hand to scratch my head, nose etc. instead of my fingers and I drop lots of lightweight things. Fumble fingers. My typing is terrible! I make so many mistakes now.

I cannot do a single push-up. If I lift anything heavy my arms shake.

Etc.
 
Take the 99% and run with it. Not saying there is nothing wrong but you need to look elsewhere. I can't do a push up and drying my hair is a chore. I use a cane for stability.

Don't stop living your life, do what you can with what you have. Don't give up or give in. Be patient let the drs do their thing, they know best. It may take time to narrow it down.
 
Thanks. I will try to do that. There is something definitely wrong, and I know it could be a multitude of things. I understand everyone's frustrations.
I am 6 months into this and can still do most everything I could before. It's just more of a struggle!

I spoke with a physical therapist yesterday (friend of a friend) and she said that she has patients with spinal problems who have bilateral weakness and fasciculations. This contradicts what the orthopedic surgeon told me, but I'm inclined to believe her.

Evidently any nerve compression in your spine can cause weakness and fascics anywhere below the area of the compression. So I'm going to concentrate on that and not this extremely rare disease that we all fear.

The internet is a blessing and a curse. I wonder how many people have been convinced they have a serious disease by searching the internet. I'm sure it's a lot more than those who actually do have something serious.

When people come to this site, they assume that nearly everyone here has AlS, MS or something similar. I think the truth is most of us don't. But we are all sick or we wouldn't be here. Thanks for offering your advice and knowledge.
 
I am hoping the best for you. They will get to the bottom of it all and then you can move on and live the life you were meant to. 6 months is not a long time in the scheme of things. It took 5 years to get my answers. After the 1st year of searching I decided that I would not let it control my life.

It didn't matter what it was, I kept searching for an answer but I also continued to live my life and learned to adapt and work around the limitations I was having. My diagnos is didn't change anything, I am living my life as best I can, all it did was ease my mind and put a name on it.
 
5 years is a long time! I'm glad you found the cause of your symptoms.
I know I should be grateful that my diagnosis is leading away from ALS, but weakness and debilitating symptoms of any nature are hard to deal with.
Thanks for all the answers and advice.

My fascics overall are stabilized except the one in my foot that has been going non-stop for about 6-7 days now. I read a lot on the BFS forum and it seems there are many like this. I wish we had more answers.
 
Daniel your talking days and months. Believe the neuro you don't have ALS but hopefully your doc can figure it out. If not can you go and get another opinion?
 
I'm giving the exercises a try but no help yet. If I don't get better I will seek out another orthopedic surgeon. They have not even looked at my lower back which is probably just as bad as my cervical area.

I am feeling far less stressed since Txgirl explained my EMG results. That's such a huge relief and I wonder why the doctor could not have explained it to me in terms I could understand.

I'm still weak and still twitching (a new one behind my right shoulder) but the fear is less.
I only need to find a doctor who can tell me what it is or give me some relief of symptoms.
 
Finding the right dr is key. It took me several before I was sent to a university hospital and I got my answers there. This dr listens and talks in real people terminology.

I am glad you feel better after talking to Txgirl, stress can take a toll. Keep us posted. Good luck.
 
I'm no expert, but you mentioned you are afraid all the twitching will "wear out" the muscle. We were told by one of the doctors at the ALS clinic that twitching means my husband's muscle is still receiving signals from the brain, but they are "misfiring". ALS is a disease of the motor neuron, not the muscle. He can expect when twitching subsides, that the muscle will totally atrophy because the motor neuron will have died and his muscle will no longer be receiving any information from the brain. I also read that people who live in fear of an ALS diagnosis can actually experience fasciculations from extreme anxiety, these can actually increase from the stress. Food for your thoughts. Hope you find an answer.
 
Thanks....so I should be happy I'm twitching or should I be afraid of atrophy once it stops?
Thanks for the support and information. I hope I find the right diagnosis and treatment.
 
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