I am a bit confused and could use some guidance

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Cjgroe

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I am M, 54, and have been to the neurologist multiple times and have an abnormal Nerve conduction study in my legs, and one negative (normal in arms). I have really bad calf twitching for over a year that has gotten quite painful and cramping the past few months. The doctor tells me "I don't think it is ALS" (not confidently IMHO) which is not too reassuring. Brain MRI is normal. Cervical MRI no lesions but massive herniation at C3-C4 that is pressing on cord but normal signal. Also severe stenosis in this disk. Lumbar has L3-L4 issues which I had surgery in December, but while fixing back, did nothing for leg issues. L5-S1 on MRI has no herniation, and only mild stenosis. Arthritis and stenosis throughout lumbar and cervical spine, but probably expected at my age. Legs are twitching progressively worse by the month, and I am getting worries as to why? I haven't seemed to lose any strength yet which I take as a positive, but I am starting to feel a bit unsteady at times. (getting out of bed in morning, Walking up stairs)

NCS and EMG below, but I don't fully understand them to be honest. I am trying to get second opinion from another Neurologist , but can't find an appointment before July. As a final piece of information, I am diabetic for 25 years (type 2 and only on pills) and A1c is very well controlled between 5.8 and 6.5 at all 6 month testing intervals.
I appreciate any help or reassurance in advance as I am getting a bit worried now with legs continually twitching worse. Thank you for your time and listening.

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The good news is that with ALS the NCS is normal.
If you read the Findings and Impressions there are 2 things detected in all the red highlighting - radiculopathy and peripheral neuropathy.

Your doctor needs to explain this to you as the report says this report needs to be related to the doctors clinical findings.

It is not what we see in ALS.
If you read the sticky READ BEFORE POSTING post it makes it clear that twitching means nothing.

I think you can work with your doctor to sort what the next step is.
 
Thank you for your time. I did read the sticky before posting, I got confused when the cramping and unsteadiness started in concert with the twitching. I apologize for my confusion as the Dr. seems to have sort of waffled when speaking to me outside of the clinical report, hence me looking for a new neurologist. Additionally my back surgery did not help and the L5-S1 on 4 MRI's since July have all been basically the best disc in my back. Between that and my diabetes being extremely well controlled it seems the DR is a bit lost on what exactly is causing it, which fed my trepidations. Thank you again for taking the time to respond and help ease my mind a bit.
 
No problem - just to clarify tho: the hallmark of ALS is clinical weakness.
Twitching, cramping, feeling unsteady, feeling weak, pains, aches and tremors all mean nothing without clinical weakness.
Other things very treatable can cause clinical weakness too.
This means that you do need a doctor that will go over things with you clearly. But you can also make a list of questions and concerns to be sure to ask directly to help this too.
All the best with a second opinion.
 
To clarify, it's not that the NCS is always normal in ALS since people with ALS can have other nerve problems besides those that affect the motor neurons. But your NCS and EMG point to sensorimotor neuropathy, which is not ALS, and ongoing spine damage. In fact, even controlled diabetes can damage nerves over time. This is sometimes seen even in "pre-diabetes." However, you are much less likely to have severe damage because of your tight control.

These conditions are usually treatable to some extent, so I would ask about PT and possibly an evaluation by a physical medicine/rehab physician ("physiatrist") or orthopedist who specializes in a medical approach to spine issues. I would also consider therapeutic massage by an MT experienced in treating neuropathy and radiculopathy. Sometimes the irritated nerves/jumpy muscles can be "reset" a bit.

A warm therapy pool, walking, stretching, etc. can all be good. If you have not tried a dab of magnesium lotion on hot spots, that may be worth trying as well. And of course, eating and drinking so as to avoid electrolyte imbalances (perhaps consulting with your dietician or finding a new one) can also be very helpful.

Best,
Laurie
 
yes but the NCS is not abnormal because of ALS. Sorry again I was not clear in how I wrote my post.
 
Thanks to everyone who answered. My plot somewhat thickened now. My left calf has apparently begun to waste away fairly rapidly now all of a sudden. (it wasn't there when I originally wrote post a month ago ) My wife noticed it when I walked out of the shower, and my neurologist measured and confirmed that it is now 1.5 inches smaller than right calf, and is now concerned and a bit confused. Neurologist backtracked a bit and unfortunately put potential ALS back on the table as the myriad of bloodwork she took came back normal other than RF which was 36. The fasciculations have gotten way worse in the left leg and have now moved above the knee into the thigh for the first time. Both calf muscles hurt all the time, and cramp up every night waking me up. The neurologist has now referred me to a Neuromuscular specialist from HSS on April 26th, which unfortunately was earliest appointment available. Apologies in advance for another reply, but my brain is working overtime now and stress level extremely high after that last appointment with neurologist.
 
I would still bet against ALS. You mention an increased RF. RA, among other conditions, can cause atrophy and you continue to describe a localized condition. Did they run a rheumatology panel? Screen you for sleep disorders?

Try to move your brain in another direction. The odds are still very much in your favor as regards ALS or anything like it. Meanwhile, to get more sleep, besides what I mentioned earlier, you could try a low-voltage heated mattress pad under your sheet or overlay.
 
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