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Xfile1966

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I recently had an EMG and it showed small abnormalities in the Left Supraspinatus (+1 Fibs) Left & right Rhomboid Major (+1 Fibs), and right Cervical Paraspinal Low (+1 PSW and CRD) muscles. The doctor said these alone didn't have the characteristics (sounds, look, etc..) of ALS but of possible neck injury. She ordered an MRI and I do have damage to my C5 thru C7 discs/vertebrae.

The rest of the EMG was normal (Left arm, left leg, right leg and back).

I'm confused because I've heard that if ANY supraspinal/paraspinal muscles show problems then it's ALS? Period.

Can anyone clarify this for me?

(I do have MAJOR muscle pain, atrophy, weakness, fasiculations, etc....but another neurologist gave a second opinion and said no ALS - maybe Mitochondrial disease, MD, Lyme disease, genetic disorder, etc...)

Very confused......:confused:
 

vickim

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2 Neuros say no then I would run with that. I have mito disease and it was dia gnosed by a muscle bio. I would wait for the MRI if you have had an injury and see what it says before I started to worry too much. Pinched nerve can cause atrophy and pain and weakness too.
 

Xfile1966

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Hi, Vicky. The neck MRI showed neck injury and I also have lower back injury, support by an MRI (worse than my neck).

It's hard to push ALS to the back of my mind (for everyone I'm sure). I try to hold on to the fact that ALS doesn't cause muscle pain and I definitely have THAT. I use a muscle, even just a little, and I'm practically crippled by the pain the next day. I can still walk on toe, heels, stand on one leg, after 8+ years of this, but even that causes pain. Plus, my condition went in to "remission" for nearly 4 years, which I don't think happens with ALS....

I'm going to Emory in February to try to figure this out. There are no mito disease doctors in my town, or the state that I know of, so Atlanta it is. But my kids are of the age to have kids of their own so we need to see if this is bad genes or something else.
 

vickim

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No there is no remission, no getting better. Mito is part of the MDA family and I am sure there are MDA/ALS clinics there somewhere if you want to check that out. You could also look it up on the MDA website.

I have heard Emory is a good place and you should get info there. Mito is passed through the mother and I had all boys. I did not have genetic testing done, insurance would not pay for it. I hope you find out it is just from your old injuries and can be fixed. Good luck.
 

Xfile1966

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I will add that I have brisk reflexes at my knees (no where else), but no babinksi sign, etc.... I don't startle easily, don't have spasticity and have never had a cramp. Except for my knee reflexes I have no upper motor neuron symptoms, which is probably why the doctors won't DX ALS - esp with the mostly normal EMGs.
 

Xfile1966

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Great article! Very informative.

My twitching is definitely NOT like ALS. It comes and goes and is all over the place! And not necessarily in my weaker muscles.

My left side muscles are clinically weaker than my right side and there is more atrophy. But I'm still able to stand on my left leg, walk on my toes, etc...

I'm thinking maybe I have BFS and perhaps the mito disease the dr mentioned). Will keep this article handy for those days when the twitching gets my imagination wildly active - which of course ups the twitching!
 

vickim

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Are you going to get the muscle bio?
 

sadiemae

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Great article! Very informative.

My twitching is definitely NOT like ALS. It comes and goes and is all over the place! And not necessarily in my weaker muscles.

My left side muscles are clinically weaker than my right side and there is more atrophy. But I'm still able to stand on my left leg, walk on my toes, etc...

I'm thinking maybe I have BFS and perhaps the mito disease the dr mentioned). Will keep this article handy for those days when the twitching gets my imagination wildly active - which of course ups the twitching!

So glad it helped ease your fears
 

Xfile1966

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Vicki- I hope the doctors at Emory recommend one. I also hope they'll test for Lyme disease. I see the doctor who performed my latest EMG next week so ill go over questions to ask and things to do. :)
 

Xfile1966

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Ps- I have a daughter so if mito disease is passed through the Mom I definitely need to find out before she has children of her own.
 

vickim

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Well yes, but she could just be a carrier and none of the children get it. It could skip generations. I have no known family history. But it would be a good thing to know and make informed decisions when the time came.
 

Xfile1966

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Yep, Vicki. If it's mito disease it sure waited until I was much older to show itself. So many strange things out there....

I noticed today that when I'm really stressed that this is the time I feel most weak and my heart does it's weird "let's beat super slow or high and flip flop like a fish" (I have an "electric" problem with my heart). Guess I need to work on stress too!
 

vickim

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Yes I am adult onset but I think there have been signs and never put two and two together. Stress is bad for mito as well as extreme heat and cold. I have a electric problem with my heart, nothing dangerous though. Its all crazy. I am learning as I go. Just keep digging they will figure it out.
 

Xfile1966

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Ho hum. I'm still concerned about the No - ALS DX. My legs continue to deteriorate at an alarming rate - I'm afraid that at this rate I won't be walking when I go to Emory in Feb.

My calves are very very thin and flabby - my thighs are getting flabby too. I realize I'm probably adding fuel to the fire since they hurt so bad I can't exercise - and if you don't use it you lose it....

And of course the all over twitching doesn't help!

I do see the doctor who did my last EMG (& nothing at all was wrong with my legs) the 27th. I suppose the same thing to do is to ASK HER. Maybe she can prescribe some physical therapy....

:-$
 
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