Cold Feet about scheduled EMG

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Bamamom

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I am supposed to have a repeat EMG in a couple of weeks and am having cold feet/ thinking about canceling it. Really wondering if it would be better not to know for as long as possible. On the other hand, if it is negative, then I will know that for sure.

I am 57. 3 years ago, I had what I thought was a tremor in my left index finger. I was concerned it would interfere with my work. I saw my PCP and then a neuro who did a DATscan for Parkinson's, bc my father had it, and it was negative. I told her at the time that it felt like the shaking muscles do in a hard exercise, but she was pretty sure it was a tremor. 2 years ago, she said the muscle between my index finger and thumb was atrophied and had fasciculations. I had not noticed this... the shaking had pretty much stopped, but it turned out that was because the muscle was weaker. I was unable to do things with my pincer grasp on that side. I changed jobs so to one which doesn't require fine motor skills.

She wanted to do an EMG, but when I asked if there was any way to fix the muscle, she said no, it probably got injured somehow... so I said I wasn't going to waste the money, lol.

Then my thumb on that side got a weak muscle in the palm-- really weird, flat and kind of mushy-- so I agreed to the EMG last fall. She thought I had both carpal tunnel and ulnar tunnel maybe. No pain or numbness. But the NCV was normal. The EMG showed chronic denervation/ reinnervation in those 2 muscles and she thought it must be a radiculopathy, so I had an MRI of my neck. I have a big deductible, so this was getting pricey. It was stone cold normal.

She asked the EMG specialist if it could be ALS because these muscles are the "split hand" ones. She is not a neuromuscular specialist. They said there was no acute denervation, but that I should have another EMG in 6 months and this time do 4 extremities, because of the particular muscles involved. I managed to drag that out to 8 months but it is coming up.

Last month, I had a follow-up exam with her and she said I have hyperreflexia. My right arm jumped all the way up to my shoulder when my wrist got tapped. In the past month, I noticed what I thought was maybe a rotator cuff issue on the right, and I got a PT referral. It turns out I have several weak muscles on the right side, both leg and arm-- the other side from my hand. My right foot lifts up at 3/5 and that foot occasionally scuffs the floor a little. My shoulder forward flexion is 3/5, and my pincher strength on both hands is 2 on the machine (supposed to be 11?). My right quad is atrophied and 3/5. I don't see how that could have been happening without my noticing it, so now I wonder if it was just always like that. The PT asked if I had a brain tumor, and I'm like lol, no, I'm sure not. Anyway, she said it was not normal, but who knows if I was just born that way? I've always been a klutz.

I don't think this could be ALS because that seems like a random kind of pattern, and it also seems really slow compared to what I've read. I feel like I am going to spend all this money to learn nothing. And if I do have it, I am really not sure I want to know until the last possible minute. I mainly wanted to know if it was something that could be fixed.

Maybe this is an irrational attitude on my part, wanting not to have a diagnosis. I am wondering if any of you wished you had not found out until later, or if there is an angle I am not thinking about. Also, I would like to know if you agree with me that this does NOT sound like ALS. Thank you so much.
 

lgelb

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Can you post the EMG from the fall, with your name obscured?
 

Bamamom

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Yes, @lgelb here it is. The radiculopathy didn't show up on MRI, so I think the neuro saw what the report said about "focal motor neuronopathies" and zoned in on it. But that is not the same thing as ALS... it just means something wrong with the motor neuron, as best I can tell.


Electromyography

SideMuscleNerveRootIns ActFibsPSWFascOtherAmpDurPolyRecrtInt PatComment
LeftAbd Poll BrevMedianC8-T1Nml000None1+1+1+-1Nml
Left1stDorIntUlnarC8-T1Nml000None2+1+1+-2Nml
LeftFlexCarRadMedianC6-7Nml000NoneNmlNmlNmlNmlNml
LeftFlexDigSuperMedianC7-8Nml000NoneNmlNmlNmlNmlNml
LeftExt IndicisRadial (Post Int)C7-8Nml000NoneN/1+1+2+-2Nml
LeftBicepsMusculocutC5-6Nml000NoneNmlNmlNmlNmlNml

Summary:
Motor, antidromic sensory and mixed palmar sensory nerve conduction studies (NCSs) of the left median and ulnar nerves are normal.
There is no relative prolongation in the left median mixed palmar sensory peak latency compared to the ulnar mixed palmar sensory peak latency.

Antidromic sensory NCS of the left superficial radial nerve is also normal.

Monopolar needle examination of selected muscles of the left upper extremity, representing the C5-T1 myotomes, shows mild-to-moderate chronic reinnervation changes in the C8-T1 myotomes.

Conclusions:
This is an abnormal study. There is electrophysiological evidence for a chronic, mild-to-moderately severe C8-T1 radiculopathy on the left. Routine electrodiagnostic studies cannot differentiate between radiculopathies and focal motor neuronopathies. There is no evidence for a superimposed left median neuropathy at the wrist based on this study. If clinically indicated, MRI of the cervical spine with and without contrast may be performed to further evaluate the cervical radiculopathy and exclude a left ventral spinal cord lesion at the C7-T1 level.
 

Nikki J

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If there is something wrong thst could be found on emg you should have it. It could be something treatable and further delay would be bad. If it is ALS and I can’t tell how likely it is then treatment can help slow it further.
 

lgelb

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It is a CYA statement that routine EMGs can't rule out focal motor neuron problems. "Focal" is the opposite of ALS, which generally progresses to involving nearly all or all voluntary motor neurons. The lack of acute denervation argues strongly against ALS, of course. The fact that a spinal lesion wasn't seen on MRI doesn't rule out radiculopathy, either. I would ask about PT either way. Insidious atrophy can have a variety of causes, but you are old for adult-onset muscular dystrophy and you said no spinal lesion was seen on MRI.

Did you ever have any kind of unexplained/severe systemic illness, reaction, or toxic exposure? I take it you didn't have polio as a child or anything like that?

If you are not significantly more functionally impaired than when you had the last EMG, I could see making an appointment with an actual neuromuscular center, likely with some weeks/months of lead time, doing an exam there first to see if the differential includes something timely/treatable, and taking the question of an EMG or any other testing from there. You may have tapped out the expertise wherever you are now.
 

Bamamom

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@lgelb thanks! That's a good idea. I don't see any need to rush. I'm seeing a neuro at UAB that my PCP referred me to, but bc they thought it was a tremor, she's the movement disorder specialist and is mainly a researcher. She did check for thyroid, b12, autoimmune, etc, but that is my feeling-- that she's repeating the EMG bc it's something to do. Maybe she can refer me to neuromuscular instead. There's always a wait of several months, so that will be enough time maybe for some other reason to become clear or to find out if I can reverse any of it with PT.

I didn't have polio or any severe illnesses, or any toxins so far as I know.
 

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Let us know by all means once you have a diagnosis and I hope things go well for you.
 
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