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taxmeless

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Jan 3, 2018
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Learn about ALS
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US
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Florida
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Miami Beach
Recently I was having problems with my neck. I had an MRI at a local hospital that showed extensive stenosis of my cervical neck spine. All three spine surgeons I visited insisted on immediate operation to repair since my spinal cord is being compressed. I am scheduled for surgery on Jan 16th.

During my last visit with a surgeon, I had expressed my concern that I recently have a strange feeling in my right leg. He then ordered an EMG of just my arms and neck strangely that came back perfectly normal. When I returned home and for a few weeks since, I have had constant twitches 24/7 in my right calf muscle and some occasional twitches in my left ankle. My gait and strength seems reasonably normal, but when I do exercises my leg muscles feel very sore for days and they always feel tight below my knees. These "leg" issues cannot be related to my c-3-c7 spine issues. My reflexes are hypersensitive in both my upper and lower extremeties during exam as well.

I feel apprehensive to do surgery until I have a reasonable assurance that I am not suffering from neurological symtoms as that would speed up the neuro degenerative process further and take away quality time off my life.

I guess my biggest question to the group is would an EMG of the arms and neck that is normal give me that assurance or do I need to get a EMG of my legs performed?

In closing, I want to send my hopes and prayers and love to the group. I will give anything of myself including my next 10 years salary to see a cure for this disease. PEACE!
 
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Please read the Pinned Post with the alluring title Read Before Posting.

Clean EMG, from ANYWHERE on your body, means no ALS. There's no such thing as arm- or neck-only ALS.

For your other concerns, see sentence #1
 
Thank you for pointing me to the information i needed. From review I guess its still a possibility since my upper problem is likely related to my cervical neck spine issues. My leg problems could still be neurological and different. I wondered if the EMG would detect anything below the brain stem for ALS no matter the location. I guess from reading the statement on the site, it can be very location specific, I will do an EMG of the legs just to be sure, Wishing you the best and Happy New Year.
 
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Generally, in the scenario you describe, a clear EMG of the upper extremities puts you in the clear for ALS, but this clean EMG also calls the indication for spine surgery into question, though of course I don't know what findings were reported. Note that many people with mild or even moderate cord compression do not need or have immediate surgery, unless they have motor deficits, bladder dysfunction, etc. PT and other modalities are often tried first, and are often successful enough to avoid surgery.

I would seek a 4th opinion with a neurologist (not neurosurgeon) in a different group (different city, if you can), and be open to a re-evaluation of the imaging and/or a new study.

BTW, leg issues can indeed be related to c-spine stenosis. They can also relate to a lot of other things, as well as nothing.

Best,
Laurie
 
Thank you for taking the time in reading and responding to my post. I agree with everything you said. I have been to three spine surgeons at three locations... all top notch highly rated facilities and doctors in Miami, NYC, and Baltimore. They all say my cord is severely compressed although I have very limited symptoms in my arms and only mild discomfort in the neck. But its hard to discount their opinions when all three agree. I realize surgeons make money off doing these procedures and wonder if that is an influence. But reading about it online, it seems this problem only gets worse over time and early intervention is best before signifcant loss of function begins. I was told that any issues with my legs by these surgeons cant be related to my neck. They did an MRI on my lumbar and that was negative and normal thankfully. I might add that it was also detected by a CT scan that I have an unruptered brain aneurym. I cant do an occlusion on that until the neck is fixed since I would be on blood thinners for 6 months or more after the procedure. If my neck symptoms become more problematic while the anuerysm is healing I couldnt do surgery. Life is complicated and Murphys law sure seems to come when you age. lol .
ALL my love to you! Thank you!!!! ..Regards Wayne
 
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Now in Panic mode

I posted before my concerns about symptoms. I am scheduled for cervical spine surgery c3-c7 at HSS in NYC that I think I an cancelling now to give time to confirm that I dont have ALS.

For 5 weeks I have experienced non stop 24/7 twiching in my calf muscles. I recall for many months prior occassional twiches that I didnt take seriously at the time not knowing its ramifications. It started seriously in my right calf and now is in both. I also experienced this week an occasional eye and arm twich. I also have some minor gait issues with my right leg for awhile now but no physical limitations beyond that.

I had a normal EMG on my upper limbs several weeks ago. Some people commented that would exclude ALS. But my issues are in my legs. I hope this is true but.... NOW I AM REALLY SCARE CAUSE! .....

Most damning, is I just noticed today atrophy in my right calf muscle when compared to my left. About a quarter of the muscle on the interior is shorter then my right. It just disappears at the bottom. I am so scared now. SO TERRIBLY FRIGHTENED!!!

HELP!!!!!!!!!!!!!!!!!!!!
 

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Mod note: merged threads. Please continue posting in this thread to keep everything in one place.
 
I was hoping to keep it separate to get opinions. Now it seems lost. Thanks for making it harder.
 
Cervical spine stenosis very definitely can affect the legs as well as the arms and cause brisk reflexes in arms as well as legs.
 
with atrophy and twitches?
 
Yes. If the nerves in the cord are being intermittently prevented from sending signals to nerves that send signals to the muscles, the muscles can shrink (atrophy) and twitch because they're not getting the nourishment they need.

That said, the symptoms in your legs don't prove that you do or don't need surgery. And as with any neurological issue, I'd get a second opinion on the brain aneurysm before undertaking any spine surgery anyway. For one thing, surgery affects blood pressure, which affects aneurysms.

And you need to get the two teams talking with each other and you, about competing risks. Anticoagulation protocols for various procedures have changed, so you want to make sure the latest thinking is incorporated in your treatment plan.

But back to the issue of ALS. A clean EMG in your arms argues strongly against, regardless of new symptoms in your legs.
 
You are sweet, Made me optimistic. Feeling my life was over. You gave me a glimmer of hope. THANK YOU!
 
Taxmeless- That's borderline rude. Please read the forum rules. Having a single thread makes it easier for the members of this forum see the entire picture and provide the correct advice. There are people who find it difficult to navigate multiple threads due to a variety of issues and it's about their comfort and ability. You are receiving great advice, please try to remain civil.
 
To be clear, sometimes posts cross. ShiftKicker is referring to the complaint about merging threads as rude, not taxmeless's most recent comment of thank you.

General comment to people who post in DIHALS threads: the reason we ask that you stay in one thread is that you will actually get more, not fewer responses that way, and they will be more full-throated because it will be easier for members to follow what is going on. Many of our members find it difficult to read, post, scroll and click, so this isn't rules for rules' sake. Thank you for understanding.
 
Taxmeless, That is a very odd name for someone looking at some very expensive health issues. ALS is known as the bankruptcy disease. Even having spinal surgery is gonna put a big hole in your pocket. In Canada where we pay more taxes all the medical stuff is free. Just wait till Paul Ryan et al start trying to make up the the tax giveaway by cutting "entitlements" like medicare/ medicaid.
Vincent
 
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