All Neurologists are not created equal

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KevinM

Senior member
Joined
Mar 30, 2019
Messages
559
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Hi everyone. This fairly long story may seem self evident, but it can’t be stated enough—which this site strongly emphasizes—to always get second or even third opinions when seeking an accurate diagnosis for not only suspected MND but for any neurological issue. Most important, seek out a neuromuscular specialist. I know in some rural areas all one might have is one or two general neurologists, but don’t rely on their opinion as rock solid.

My wife and I learned firsthand this morning that as much as we would all like to assume that there is at least a fairly high level of objective consistency in both clinical exam tests (strength and reflex grading) and EMG/NCS testing and interpretation, that is not the case at all. Boy, that is not the case.

Some background: About the time I was diagnosed in 2019 by a respected neuromuscular specialists in our state, my wife got freaked out because she had begun to experience some fasciculations and perceived muscle weakness in her left leg. As Laurie and others here have pointed out, it isn’t uncommon for loved ones of pALS to develop sympathetic symptoms, but she was terribly concerned that we had somehow both been exposed to a toxin and she had MND as well, despite the almost incalculably small odds. She has had a weak back all her life with several sciatica flare ups each year, and I felt that if she had anything at all it was due to some minor sciatic nerve compression.

Her symptoms persisted so to ease her mind two years ago we saw the same local neurologist that I had first seen before I was diagnosed by the specialist. This local fellow was by all accounts well respected with more than 25 years experience who diagnoses about 4-5 cases of MND each year. Yet his strength and reflex exam techniques were so different from my specialist as to be laughable. A 99-year old could easily resist his strength tests, and his reflex tapping was so light you could barely feel it. My specialist literally wraps his leg around a table leg to get more leverage when he pushes and pulls. I think I could still score close to normal if I went back to the local guy.

The biggest difference, though, was his EMG/NCS ”technique.” The nerve conduction on my wife’s lower legs were done quickly and half-assed in my opinion, and when he did the needle portion on both legs he barely kept the needle in for a few seconds, didn’t ask her to contract her muscles, etc. Afterwards he confirmed no evidence of MND but said she had mild axonal polyneuropathy in the tibial and perineal nerves below the knee. Okay...

Flash forward to the past couple of months. My wife’s leg issues had persisted, she didn’t trust the first diagnosis, so we went to the local Neurology Clinic at the hospital, whose team includes a neuro-muscular specialist who did residency at Mayo with some top notch mentors. Last month he did a thorough clinical exam and found everything to be normal except for a slightly weak hip flexor and tenderness in her lumbar area and glute. Because we were basically wanting a second opinion on the neuropathy diagnosis, he ordered an EMG because frankly I don’t think he trusted the one done before Or the conclusions drawn.

This morning she had the EMG, and it was night and day different. He checked every muscle in her leg, her left arm, and even her back on that side. Made her contract each one as you are supposed to do, and left the needle in to make sure of the readout. Guess what? No evidence of neuropathy, MND, or radiculopathy. He noted some arthritis in her lower spine and hip, but that’s it. He knew what he was doing, plain and simple. We will follow with an MRI to help pinpoint the main areas, and some rehab.

So the message is simple. If a local neurologist says you have something bad, please don’t accept it as the final word.
 
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