Physician being worked up for neuromuscular problems

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Heesoos1089

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Hello all,
First off I appreciate everyone taking the time to read and respond to this.
To give some background, I’m a physician working in the ER, historically highly active fit and healthy.
After having moderate Covid 1 year ago I sustained prolong symptoms, developing long Covid with significant fatigue, lightheadedness, headaches and much more.
I essentially pushed through these symptoms and continued to work. About 1 year in, starting in July 2023 I began having R hand dexterity issues, difficult handling my phone. Of note, my baseline is very strong and have a healthy amount of muscle. This dexterity issue continued as i then began experiencing cramping in my forearm and stiffness. I contacted my friend and neurologist 2-3 weeks into this. I received a clean EMG/NCS.
My symptoms continued and progressed with more cramping and then fasiculations in the arm. I was followed up with extensive workup, bloodwork, lumbar puncture, MRI head neck etc. all normal.
Fast forward, my symptoms of cramping, stiffness, fasiculations have spread to my R leg as well and I’ve noticed mild atrophy in my R forearm, bicep, R calf and R thigh- confirmed by neurologist.
I recently saw an ALS specialist in Boston MGH, this is now about 2.5-3 months into symptoms. With the mild atrophy, fasic, stiffness, cramping etc. Repeat EMG/ NCS was once again normal. Neuro exams with no obvious upper motor neuron signs , although brisk patellar reflexes noted. ALS specialist explained she does NOT think it is ALS - as the emg given my symptoms should have been positive by now. I also saw neuro immunology given the underlying long covid symptoms.
I’m having additional bloodwork and biopsy at the moment.
As a health care provider myself, an analytical individual, and someone who knows their muscles and body movement very well- this has been beyond troublesome to me. Especially to let go and have the specialists take over. The fasiculations progressing, the stiffness, cramping, atrophy (still mild) and more. My concern - despite the ALS specialist saying it should be positive by now, is that it MAY be done too early. As I have read extensively about how this often is not the case, I have also read otherwise. Additionally, with no other diagnosis evident, being in this grey area has been relentlessly difficult.
Unsure what I’m looking for with this post, possibly reassurance, and or support.
I appreciate everyone’s time.
 
As I am sure you know the Healey center is among the best of the best. I think it IS the best though perhaps I am biased. What did neuro immunology say?

If they did not start riluzole then they really don’t suspect ALS as they started prescribing it early a few years ago. Did they essentially transfer you to neuro immunology or do you have Healey follow up planned?

We have seen some fairly significant post covid syndromes reported here
 
Hi Nikki

I appreciate your reply. They definitely are amazing and very well respected. Very grateful to be seeing the specialists here.
Have you had your care at the Healey center?

Neuro immunology agrees with the care at the Healey center. They also do not suspect it given the normal EMGs.
I assume I will be followed by both Healey and neuro immunology together as they figure it out. Pending follow up.
Neuro immunology is running an extensive auto immune panel out of wash U and Mayo Clinic. They have not prescribed any riluzole as no diagnosis has been made. They both do not think so.

Right I can imagine. My post Covid symptoms have progressed but the neurological symptoms were completely new and extremely concerning.

Just watching and waiting now.
 
Delayed onset of covid neuropathy manifestations is common.

I have been going to healey for over a decade. First as a carrier research participant then as a patient too. My sister was a patient before me. I know most of the doctors and nurses from either clinic or research. They are all stellar.

A relative by marriage was a neuro immunology patient there too. They were treated really well.
 
Agree ALS doesn't come to mind at all w/ sx that would signify fast progression vs. 2 nml EMGs.
 
I appreciate the responses.

The post Covid symptoms didn’t come together with the new neuromuscular picture. They began over a year after. I do believe it was the underlying culprit for whatever is going on.
Unsure yet what the diagnosis is but I would not be surprised if the rate of future neuro degenerative illnesses drastically increase due to Covid.

Couple interesting things I noticed was both the EMG and NCS done differ among the facility / provider performing them. The locations tested varied; for example median nerve distribution was not tested during NCS. Nor radial nerve. Unsure if this reduces the sensitivity of the studies and possible false negatives.

Any questions anyone recommends I ask upon my follow ups?
 
My experience is with the ncs they only do one or two sites when the focus is the emg and these vary so I don’t think it speaks to the validity of the test

The emg is the emg and the results are not affected one iota by the ncs

We always recommend that you focus on asking what is wrong and presenting your symptoms in a concise and meaningful way. I think it is particularly important for health care providers not to try running their own workup. You have stellar doctors. Let them do their job. You might ask if an nfl would be helpful at all. It absolutely will not diagnose you but if it is low that would be reassuring
 
Thank you Nikki

Couple months ago I had read some studies discussing distal forearm testing during NCS to yield higher sensitivity, furthermore early in onset fibrillations aren’t as commonly found, vs reduced recruitment. But I’m not the professional seeing thousands of patients.

Letting the reigns go can be tough for a health care provider but I’ve been having the team do their job.

I had a serum NFL tested very early in my presentation on August 9th which was 1.2pg/mL. Range: 0 - 1.87 pg/mL. Done with Labcorp.
 
Well that is an encouraging value. Re fibrillations I had them 7 weeks after my first minuscule symptom. I only had the emg for a research study as I would not have gone to the doctor for something so trivial. I was embarrassed to mention it to the research doctor
 
Thank you.

That’s very interesting, and reassuring. I had read too that it can detect abnormalities before any clinical weakness even sets in. So much discussion around EMGs/ NCS online. I can see how it can be exhausting to sift through.

I had a question about a symptom.
I’m not sure what this is considered; but after intentionally contracting my tricep on my affected R arm, it becomes ‘stuck’ for a couple seconds, then releases, fasciculates and goes back to a relaxed position. This does not feel like a typical cramp.
 
To add my EMG results:

Reason for Study: 33 y.o. male presents with twitching and feeling of stiffness/weakness in the R UE, particularly the wrist flexion. Focused exam notable for fasciculations seen, 5/5 strength throughout. Electrodiagnostic studies requested for the evaluation of motor neuron disease, peripheral nerve hyperexcitability syndrome.

Nerve Conduction Studies: 1. Right superficial radial and sural sensory nerve action potentials (SNAPs) were normal. 2. Right median-APB, ulnar-ADM, peroneal-EDB and tibial-AH compound motor action potentials (CMAPs) were normal. 3. Cramp fasciculation protocol of right tibial-AH at 1, 3, and 5Hz was normal without after discharges or cramp potentials.

Needle Electromyography: Concentric needle examination was carried out of selected muscles in the right upper and lower extremities, thoracic paraspinals and trapeizus, as tabulated below. There was no abnormal insertional or spontaneous activity. Few fasciculation potentials were seen in the FCR and medial gastrocnemius. Motor unit potential morphology and recruitment were normal in all muscles examined.

Clinical Correlation: This is an essentially normal study. There is no electrophysiological evidence of a generalized disorder of motor neurons or of a peripheral nerve hyperexcitability disorder. This study does not fulfil Awaji or El Escorial criteria for lab-supported ALS. The few fasciculations seen in the FCR and medial gastrocnemius are of uncertain clinical significance, and repeat studies could be considered in 3-6 months if clinically indicated.

All data has been reviewed by me and I agree with the impression above. I certify that I was present for the key portion of the needle EMG procedure. MD Neuromuscular Attending

Sensory NCS

Nerve / Sites Distance Peak Lat Amplitude Temp.
cm ms µV °C
R Radial - Snuff box
Forearm 10 2.2 29.5 31.7
R Sural - Lat Mall
Calf 14 3.8 11.1 33.1

Motor NCS

Nerve / Sites Distance Latency Amplitude Velocity Temp.
cm ms mV m/s °C
R Median - APB
Wrist 6 3.4 15.7 29.6
Elbow 25 7.8 15.6 56.9 29.9
R Ulnar - ADM
Wrist 6 2.5 10.0
B.Elbow 23 6.5 9.5 57.2
A.Elbow 10 8.5 9.2 52.2 31.2
R Peroneal - EDB
Ankle 9 4.1 8.6 29.9
Below Fib Head 34 11.3 8.5 47.7 30.1
Above Fib Head 10 13.3 8.3 48.5 30.1
R Tibial - AH Ankle 10 4.4 7.2 32.1
Pop Fossa 39 11.6 5.9 53.5 32.1

EMG Summary Table
Spontaneous MUAP Recruitment
Muscle Fib/PSW Fasc Misc Dur Amp Polyphasic # MUs Rate Effort
R. Deltoid None None None Normal Normal Normal Normal Normal Full
R. Biceps None None None Normal Normal Normal Normal Normal Full
R. Triceps None None None Normal Normal Normal Normal Normal Full
R. Flex Carp Rad None 1+ None Normal Normal Normal Normal Normal Full R.
First D Int None None None Normal Normal Normal Normal Normal Full
R. Vastus Lat None None None Normal Normal Normal Normal Normal Full
R. Tib Anterior None None None Normal Normal Normal Normal Normal Full
R. Gastroc Med None 1+ None Normal Normal Normal Normal Normal Full
R. Trapezius Upper None None None Normal Normal Normal Normal Normal Full
R. Thor PSP Mid None None None
 
The clasp thing on your arm can be a UMN thing or just an instinct to avoid pain or a weird feeling (and, as you know, many more d/o can cause UMN sx than ALS). But there is no sig LMN damage on the EMG, ergo no ALS. And no report of UMN dysfunction on exam.

So all in all, seems no reason to worry about ALS -- the few +1 activity is very commonly seen here, esp. in gastroc muscle.
 
Thank you for the response. Makes sense.

The mild R arm atrophy (distal forearm, bicep and tricep) - confirmed by neuro seems odd, especially in light of a normal EMG. Given EMG being able to pick up de innervation prior to atrophy setting in this makes it more puzzling.
 
It makes me more convinced than ever that this is something else. I really think you are doing yourself a disservice by spending time here
 
It's not puzzling at all, if you start from the null hypothesis that the atrophy doesn't represent MND.
 
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