25, Puzzling Symptoms w/Abnormal EMG

[CooperOwl98]

I would just like to say, thank you for reading this. This has been an incredibly stressful and emotional time in my life and I am posting here to see if anyone else has had similar experiences and can perhaps shed some light on mine.

April: developed eye floaters, chronic fatigue, shortness of breath, burning behind breastbone/back, occipital neuralgia w/slight postural headache

Doctor visit (Primary Care): blood counts (borderline abnormally low white blood cell count and low normal for other CBC counts), negative rheumatoid factor, ANA negative, normal TSH/TRAb, B12, low Vitamin D, high Immunoglobulin A, normal lipid panel, blood pressure/oxygen sat normal, A1C normal, CRP normal, Magnesium normal, IFE/SPEP normal

Brain MRI: normal aside from incidental finding of a thornwaldt cyst

Chest X-ray: normal

Abdomen ultrasound: normal aside from small cholesterol polyp on gallbladder

May: noticed fasciculations in hand ; now all over body, all symptoms from April persist aside from the occipital neuralgia and headache

June: burning down neck and arms, parasthesias, and all other symptoms aside from occipital neuralgia

Rheumatology visit: positive for HLA-B27 gene, ESR rate normal, ANA normal except for one titer (very low positive), low Creatine Kinase

First neurology visit: neurologist found atrophy in both hands (dorsal interossei between thumb and index) with mild weakness in thumbs and pinky fingers. No upper motor neuron signs on clinical exam.

Cervical MRI: normal (but was apparently mildly motion limited)

Second neurology visit EMG/NCS: chronic denervation found in multiple muscles. Referred to a neuromuscular specialist. Mild cubital tunnel in left arm and carpal tunnel in right.

July: buzzing in fingers at times, burning happening in primarily arms and legs now (and sometimes fingers). Worse shortness of breath (have to sigh to get a satisfying breath, sometimes cant take a deep breath)

Pulmonologist visit: PFT tests normal except TLC was 8.7 (pulmonologist said I could have hyperinflated lungs/asthma but said it was only mildly abnormal)

Neuromuscular visit: noted atrophy that the neurologist found but said strength was 5/5. Second EMG showed chronic denervation in leg, hand and arm. No active denervation or fibs. Nerve conduction study normal

August: symptoms persist, heartbeat/ pulse in middle of hand at times, perceived (minimal weakness) of pinching power

September: Less sensory symptoms now. Left hand feels much less dexterous. Cannot tell if atrophy is any worse, strength seems to be the same. Breathing is still a major issue.

Has anyone experienced symptoms like this? I have been tested for so much and everything keeps coming back normal (aside from the EMG) and I refuse to believe I have motor neuron disease (neuromuscular doc has not diagnosed and has no clue what is going on). I am having a diaphragm ultrasound next month. Has anyone experienced something like this? Since I have sensory symptoms is small fiber neuropathy at play here even though the NCS was normal? Neuromuscular doctor didnt seem keen on a biopsy.

I am including images of my EMG report. Again, thank you so much.

 

[lgelb]

I would look into a sleep study, even a single-sensor study at home for starters.

ALS looks likely off the table given the lack of acute denervation and the issues you describe. I can't read the full report since your phone screen cuts it off, but it seems like some appropriate testing is being done. If you are getting care at Maryland, there are many good academic medical centers nearby for a second opinion if things get stalled out.

I wouldn't worry about distinctions like SFN -- I'm not convinced this is even actively neurological at this point. Do you have any old injuries? And I'm sure you've been asked about viral symptoms/diagnoses before the onset of the headaches.

If your diaphragm is normal, I would consider evaluation at a long COVID clinic. Some of the labs they run are different than what you've had run. And not everyone dx'd with long COVID ever had a positive self-test result. However, since those are hard to get into, meanwhile, I would try a physiatry (phys med/rehab) consult if your PCP agrees. They may advise PT and other rehab modalities.

There are also internal medicine practices that focus on "zebras," but they may are going to start with the notion of long COVID absent any more compelling differential.

All in all, you don't describe progressive loss of function over a long period with the exception of breathing, though I realize you're in pain and trust pain management is being addressed. I assume you've had a chest X-ray (and CT if indicated). I don't think you have ALS or anything like it. So unless/until you have a diagnosis, I would focus on treating the issues that are the most treatable, in parallel with the testing you undertake.

Best,
Laurie