Wheelchair bound and still waiting for answers


New member
Apr 28, 2024
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Long story short and trying to not forget anything-

Symptoms noticably started earliest in November 2023 (thought I aggravated an old injury but now I'm not sure) to late February/early March 2024 when it really became a problem and I ended up wheelchair bound. Started with right drop foot, escalated to not being able to move below my right knee, clean knee X-ray and clean lumbar and thoracic MRI.

During the wait for my EMG appt, I lost all motor function in my right leg and it progressed to my left lower leg, clean cervical and brain MRI. Finally had my EMG (I was drenched in sweat and shaking by the time the Neuro decided to call the exam. I tried to get through it all, but my body wasn't having it) and it's not giving any direct answers either and now I get to wait another 2 weeks until my next appt with my neurologist. Just wondering if anyone can make heads or tails of my EMG report because as nice as all the medical professionals I have seen have been, no one is willing to put out any potentials other than one ER doc who said he was concerned it was autoimmune, MS (even tho my MRI's were clean), or ALS.

I'm not jumping to conclusions and I'm not looking for an online diagnosis, just figured I might have a little luck understanding the results posting on here while I continue to play the waiting game.

Other symptoms: Noticable atrophy in right leg for sure (think it's starting in the left too), nausea (currently on Zofran, as needed, for it), very little appetite, extreme fatigue, brain fog, shortness of breath (when I transfer in and out of my chair or if I talk for more than a few sentences), arms get tired quickly but no motor loss, and my hands cramp when I crochet/write/hold my phone for too long (had to take a break from crocheting because of it).

Brief history and reason for exam:
36-year-old female seen in neurology consultation by Dr. H for right lower extremity weakness. Please see his note for examination and history of present illness. Since she was seen in clinic by Dr. H she has had onset of left lower extremity weakness. An EMG of the right lower extremity was requested, but we did do additional testing on the left lower extremity (did not tolerate a full needle examination of the left lower extremity) as well.

Motor and sensory conduction studies were done with surface recording electrodes. EMG was done with a concentric needle electrode.

Nerve conduction studies of the bilateral lower extremities showed fairly symmetric changes in the peroneal motor responses including distally delayed and low amplitude responses. Peroneal motor responses corrected off the TA. Bilateral sural sensory responses were normal. Bilateral tibial motor responses were normal. Bilateral peroneal F waves were absent. Bilateral tibial F waves were normal.

This was a complicated needle examination and as the study went on she had more difficulties tolerating due to pain. There was some possible, although not definitively reproducible fibrillation potentials in the right anterior tibialis muscle. No muscle activation was present and no motor unit potentials recorded. Right medial gastrocnemius muscle showed potentially more persistent increased insertional activity, fibrillations and positive sharp waves (although was not able to clearly reproduce this finding when the muscle was later sampled albeit briefly due to pain). No muscle activation or motor unit potentials were recorded.

Right vastus lateralis muscle showed no increased insertional activity, fibrillations or positive sharp waves, but no muscle activation or motor unit potentials recorded. The right gluteus medius muscle showed no increased insertional activity, fibrillations or positive sharp waves. There was limited muscle activation and a few motor unit potentials were recorded which appeared normal although with significantly reduced recruitment (? In proportion to the level of activation).

The short head of the biceps femoris muscle showed no increased insertional activity, fibrillations or positive sharp waves, but no activation or motor unit potentials recorded. Right lumbar paraspinal muscles showed a few possible runs of P waves, although no definitive and sustained increased insertional activity. Right thoracic paraspinal muscles were attempted to be sampled, but was unable to definitively evaluate insertional activity due to difficulty relaxing and muscle artifact.

A few muscles of the left lower extremity were sampled before the study was terminated due to pain and difficulty with tolerability. No increased insertional activity, fibrillations or positive sharp waves were seen in the anterior tibialis or medial gastrocnemius muscles. There was some very limited activation and few motor unit potentials were recorded which grossly appeared normal with significantly reduced recruitment pattern (? In proportion to level of activation).

This was a complicated and abnormal (although non-specific and non-diagnostic) EMG study. There were bilateral distally delayed and low amplitude peroneal motor responses that would suggest bilateral peroneal motor neuropathies (peroneal motor responses corrected off the TA). It is difficult to correlate the nerve conduction abnormalities with EMG findings for better localization given the general absence of muscle activation or ability to record motor unit potentials throughout many tested muscles. There was some potential increased insertional activity seen most consistently in the medial gastrocnemius muscle, although I would consider these findings equivocal and not definitively diagnostic or localizing. It does not seem that the electrodiagnostic findings on this study would clearly explain her symptoms which are widespread throughout the bilateral lower extremities. Clinical correlation strongly advised
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Sorry you are going through all this. As the report says, clinical correlation is key, so the exam notes at the last/next visit would be helpful.

There are tons of possible dx, both neuro and systemic, but this doesn't sound like MS or ALS to me. Whatever happens at the next visit, I'd seek a second internal medicine opinion at UMN, if you're not there already, or Mayo.

Did you have any illnesses or injuries in 2023?