Very Concerned But Hopeful

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AnonConcerned

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Oct 15, 2021
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Learn about ALS
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New York
Hello, thank you for reading this. These last few weeks have been extremely difficult and stressful and I figured it would be good to solicit the opinions of people in this community to determine whether my concerns are justified or whether I'm simply experiencing heightened anxiety with physical manifestations.

Around September 10-15th, during a week where I experienced severe lack of sleep, I began to experience a few instances of foot drop (about 1 or 2 times per day). After obtaining more sleep the foot drop subsided but I began to experience numbness in my left foot (particularly at night) in a fashion which has seemed to mimic RLS.

I saw a neurologist on the 30th and he did a range of physical tests and said my muscle strength appears to be good and that he believes it could be a peroneal neuropathy. I asked him point blank, "Would you say it's accurate to say ALS is extremely unlikely?" and he said, verbatim, "Yes, I would say it's extremely unlikely." Nevertheless, he wanted to do an EMG so that's scheduled for this coming Monday.

Needless to say, the wait for the EMG has been filled with all manner of anxiety for me, to the point of full-scale nervous breakdown at times. The foot drop still has not recurred and the sensation in my left foot has returned, but it was soon replaced with knee discomfort and creaking, along with noticeable sensations of weakness and clumsiness, along with occasional low-grade numbness in my left hand. I have no idea whether these are merely symptoms of severe anxiety, could somebody perhaps shed some light on that? A coworker of mine also said the other day that my speech sounded nasally, but my family was insistent that it was not. I've been conducting various mild calisthenics (squats and pushups primarily) to test whether my legs and arms are still able to build muscle capacity, with no seemingly abnormal results so far, but the severe anxiety still persists and I am experiencing mild jaw and neck discomfort as well over the past few days.

As I await the EMG on Monday, I will note that I did purchase a pair of orthotic gel insoles which have provided SIGNIFICANT relief to my foot and leg discomfort (in the previous few days before purchasing them, I've also been experiencing pain in my left arch). However, I'm also not certain if fallen arches is something commonly experienced with early onset ALS. I am also very significantly overweight (5'8" & ~255lbs) so this has been adding to the confusion and uncertainty.

Is anybody able to shed some light on my situation before I head in for the EMG? First and foremost, is a clear EMG a very good sign that it is something besides ALS? I'll be happy to answer any additional questions, I understand my post is a bit disjointed and rambling, it's simply because I have a lot on my mind currently. I'd very much appreciate having somebody to talk to in this time about this, and I feel this forum might provide it.

Thank you all so much!
 
Please read here carefully

Asking your doctor is this ALS immediately skews everything from that point forwards and helps you feed your anxiety.
Take a step back, let your doctors do their job and then believe them when they clear you.
A clear EMG (as you will read in the post above) will tell you exactly why you don't have ALS, as you have no ALS symptoms.

Remember too, we are here for you to ask, but once we say this isn't how we have seen ALS develop, we can't go further.

I truly wish you the best, there are no additional questions for us to ask, as you are not describing ALS. (which is great news!)
 
Thank you so much for the reply, I really appreciate it! Yes, I read the FAQ thread you linked after I already posted, I will only post further if the EMG shows up abnormal. Thank you again!
 
UPDATE:

I went for the EMG on Monday, October 18th but the doctor refused to perform it for "sanitary" reasons due to shoe abrasions on my right foot (which have since healed), so the doctor who I had seen on September 30th subsequently called me later in the week to schedule a lower lumbar MRI for this Saturday, October 23rd.

The results of the MRI are in. I have:
-small bulged discs in my L3-4, L4-5, and L5-S1
-mild facet arthrosis with minimal foraminal narrowing in my L3-4

I haven't spoken with the neurologist yet (I'm viewing this on my medical portal) but am curious whether these issues are sufficient to have been the potential cause for my symptoms. My parents do not think so.

Thank you all so much again.

UPDATE #2: Neurologist just called and said he's not seeing anything with my MRI sufficient to be causing my symptoms, and wants to proceed with the EMG.
 
Hope the EMG helps figure things out. Remember they are used to diagnose hundreds of conditions, and EMG is not a test for ALS alone. So being sent for an EMG does not mean there is any suspicion of ALS - the neurologist is looking for neuropathy.
Let us know the results once the EMG is done.
 
UPDATE: I finally managed to get the EMG done on December 13th after having had it rescheduled several times due to the infection on my right foot. The dermatologist conducted a culture of the infection and it turned out to be a secondary staph infection that was treated with Cephalexin over the course of 10 days in the first half of November. I had severe DVT-like cramping and stiffness in my right calf and knee during the treatment but an ultrasound revealed no clotting and the stiffness dissipated within a week or two after completing the Cephalexin treatment regimen.

The summary of results for my EMG were as follows (no data tables as of yet):

Pertinent Neurological Exam:
Patient has full strength to confrontation lower extremity including dorsiflexion plantar flexion of both lower extremities with intact toe extension there is negative Tinel's testing at both fibular heads

Summary:
Motor nerve conduction study of the bilateral tibial nerves normal distal latencies and amplitudes. Motor nerve conduction study of the left peroneal nerves normal distal latency amplitude and conduction velocity. There is no evidence of conduction block or conduction velocities are across the left fibular head. Motor conduction study the right peroneal nerves normal distal latencies with mildly reduced amplitude but no evidence of conduction block or conduction velocities are across the right fibular head this of unclear clinical significance

Sensory nerve conduction studies of the bilateral sural superficial peroneal nerves normal amplitudes and conduction velocity. H reflexes are bilaterally normal

Needle examination of the left tibialis anterior medial gastrocnemius peroneus longus vastus medialis rectus femoris muscle noted denervation. Motor units had normal amplitude without without motor unit loss.

Impression:
This is a normal EMG nerve conduction study of the lower extremities. There is no electrophysiologic evidence of entrapment neuropathy in particular peroneal neuropathy at the left fibular head there is no evidence of peripheral neuropathy or lumbosacral radiculopathy.


It seems as though this would be representative of a normal result for a lower extremity EMG test, correct? Is the denervation noted during the needle examination anything I have to worry about?

Thank you all SO much again for your input, I really appreciate it. I will try to obtain data tables for my test to share if it's considered necessary.
 
I strongly suspect typo or inaccurate dictation ) denervation is inconsistent with the rest - normal exam and normal amplitude and they would have described whatever finding. Probably should have read no denervation noted. Call and clarify of course but do not worry. If you get tables before a call back post them so we can confirm
 
Agree w/ Nikki -- you are good to go.
 
huge congrats!
 
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