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mtbcoach

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I introduced myself in the new member section, I went to update and the thread was closed.

I've read through many threads, the stickies and have lurked on and off for a while. I'd read more but I don't like to focus on it until I hear the right (wrong really) words.

I had my NCS and needle EMG done today. Neuro ordered R arm/hand and lower leg, NCS tech and EMG wound up do L & R as well as gastroc, glutes, hamstring, neck , many other muscles. I did not get a hard copy of the results but I did get a peak of the EMG while the tech left the room to retrieve the MD, only saw a handful of numbers in RED.

After EMG, MD said not normal, can't rule out upper motor neuron disease, however, believes a neck/spine MRI is necessary for further diagnostics, saying referring neuro will discuss things. Luckily, that's only a week away, now the best part, waiting...

Most positive part is he said I'm not crazy, previous MD's have made me feel like I was faking, he said "not normal" results , I couldn't get anything out of your triceps and he left rather quickly.

Not wanting to become a member of this club, no disrespect, just not something I want to put my family through...
 

Dusty7

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There are lots of diseases than can give an abnormal EMG--a lot treatable--so don't get all hung up on it being ALS. Your EMG is indicative of some problem, but you sure don't know what. Not yet. That is a question for your neuro at your next appointment.

Unfortunately, most of us never get as much time with our neuro as we'd like... and lots of questions only come to us hours after we have left his office. Use the next week to think up--and write down--all the questions you have for him.

What does the EMG mean? What was normal? What was abnormal? What does it tell you?
What diseases are still on the table?
What tests will we do to confirm or rule out those diseases?

Good luck!
 

mtbcoach

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Thanks Dusty, of course I'm hopeful of most anything else...
 

lgelb

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Make sure you get a copy of the EMG/NCS report, and of the MRI as well. It will help you focus questions as the diagnostic process proceeds, and you should have them anyway. Hope something treatable is found.
 

mtbcoach

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Agreed, thanks for the reminder. I work in the medical field and tell everyone the same. I had an MRI last year, (I have that set already) that ortho screened me and said my symptoms did not match the condition of my neck, this neuro wants to see another set of images done to validate that opinion. Yes, I'll be sure to acquire a copy of the NCV/EMG reports.

Thanks also for your kind words, anything treatable will be very welcome...
 

gooseberry

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Mtbcoach, it would be good to have a print out of the whole exam not just the neuros conclusion. If you can get the actual tests of each muscle that is good to have and the disk for the mri. A lot of neuros like to review them when you go for a consult or second opinion and it can save the repeat testing.
 

mtbcoach

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Thanks for details, I did get the complete nerve study. Had my MRI today, got a phone call from the Neuro's PA, she readd me the report. Bottom line is last year's radiologist seemed to have missed the moderate to extreme narrowing of the foramen in C5-6, C6-7 and C--T1, matching the results of the nerve study report, matching the signs and symptoms I've been exhibiting, said the neuro MD will explain it all along with TREATMENT options.

I thankfully get to bow out of of the DIHALS and hope many more receive the news I've received. Best wishes to all, good health to those caring for those with ALS, thanks for the support offered...
 

tammielong60

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I pray you find something out soon. I had abnormal nerve conduction test with bad nerves in arms legs, shoulder, tongue and foot. My MRI was normal. I started out with speech problem in June and it progressively got worse and eating and swallowing is getting to the point that drinking Ensure plus now for takes hour to eat simple foods. I go to a specialist on Oct 13 for diagnosis hopefully. Its been 6 months and frustrating not knowing what this is. God bless.
 

mtbcoach

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Maybe, I'm back in. As I reported above, EMG study was abnormal for C6 rediculopathy, right triceps, pronator teres and brachioradialis showing +2 fib, mildly complex, tall, long and fast-firing noted, recommended fresh MRI. I provided images from MRI last year for radiologist to compare, the new study noted significant stenosis on right side, not noted in previous MRI. All this made sense and "confirmed" the what the NCS/EMG report noted.

Yet, I requested a referral to Neuro surgeon even though Neurologist didn't think surgery was an option. Since I've been offered no treatment options, I thought it prudent to get the surgeon's opinion.

This put another set of eyes on both MRI studies and the NCS/EMG, he re-affirmed what the neurologist said last year, your symptoms do NOT match the MRI scan, there is no stenosis on the right side and mild on the left. This is the second neuro to rule out cervical stenosis. The NCS/EMG study states..."this is of uncertain etiology, could include C7 rediculopothy or even involvement of the anterior horn cell". One neurologist and one nerosurgeon ruled out C7 rediculopothy, that leaves involvement of the anterior horn cell.

Next step is lost on me right now, I was "all-in", wanting to hear the surgeon tell me he had a treatment option for me, instead, got a firm and convincing statement that my symptoms on my right side are not related to the stenosis on my left side (duh). He was very maticulous, showing me the images, where the stenosis was and was not, contradicting the report from the most recent radiologist.

I guess I'll go back to the referring neuro, who had me convinced it was my neck and ask what direction now. He previously mentioned expensive blood tests, don't know, time to get back to work to see what he might recommend.

And, the journey continues...
 

Kosmoskatten

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At this point you should visit a MND-specialized neurologist, it is important to remember that MND is a speciality within the speciality, i.e many neurologists are not familiar with MND to the point where they can identify mimics of it.

An abnormal NCS usually points away from ALS. The lack of widespread and acute denervation (which you do not mention) strongly points away from ALS.

So from what I have read, this does not sound like ALS.

Good luck!
 

mtbcoach

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At this point you should visit a MND-specialized neurologist, it is important to remember that MND is a speciality within the speciality, i.e many neurologists are not familiar with MND to the point where they can identify mimics of it.

An abnormal NCS usually points away from ALS. The lack of widespread and acute denervation (which you do not mention) strongly points away from ALS.

So from what I have read, this does not sound like ALS.

Good luck!

Thanks for the feedback, yes, seeking a specialist is my next step.

I'm relieved but confused by your statement that "an abnormal NCS points away from ALS", I read through the FAQ and other sticky's many times and missed that.

Sensory NCS normal at all sites tested, motor NCS showed deficits in (r) peroneal, poplitial fossa and fibular head, all others normal. Needle EMG does show "denervation-reinnervation primarily in triceps, although the unstable motor unit potentials in the (r) low cervical region suggest a process at least as proximal as the nerve root as the cause of the denervation".

Not sure, in my mind, ruling out the possibility of compression at the nerve root (X2) moves the "process of the denervation" more anterior, away from the nerve root, into the spinal cord. I'm only taking it one step at a time, not allowing myself to presume or self-diagnose. Yet, being misdirected by the second MRI radiology report takes some confidence out of the process.

My intent by posting (I should have stated in my first post, sorry) it to share my experience and document/memorialize the process I'm going through. I desparately hope I'm just another one of those "success" stories where I have treatable options and will gladly bow out, as I had thought I was able to do.

I'm very lucky to live in a community with an exceptional medical community, I work in the medical field, have resources offered to me where many have to travel extreme distances, at high cost (financially and emotionally), double covered with medical insurance and a supportive wife of 26 years, I plan to pursue an answer with extreme exuberance with no intention, desire or need to join this club. Sorry if I wasn't more clear before...
 

Dusty7

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Regarding the NCS--
A couple of the most common abnormal findings on an NCS are (1) evidence of demyelination or conduction block on motor nerve conduction--which points away from ALS and (2) abnormalities of sensory nerve conduction--which also points away from ALS. That is why Kosmo said, "An abnormal NCS usually points away from ALS."

The other critical thing Kosmo said was, "The lack of widespread and acute denervation (which you do not mention) strongly points away from ALS." ALS is a disease of widespread acute and chronic denervation and your symptoms, even if not caused by a stenosis, are still localized, indicating the possibility of a more localized problem (pinched nerve, radicuopathy, etc.) rather than a systemic disease like ALS.

I do not think your symptoms and tests sound like ALS. Good luck on tracking down the problem.
 
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