Left leg problems

[RRman]

Hey all. Long time lurker, first time poster. Just want your thoughts. I’m at wits end and don’t know where to go.

My symptoms started with what seemed like an upper respiratory infection 8 months ago (fevers, chills, body aches, sweats, runny nose, cough). This afterwards went to left arm/hand clumsy feeling then the same thing in my left leg. I noticed that I began to drag it when I ran. Of course, then the fasciculations came. They started in my left tricep, then went widespread. I was a regular runner, finishing my 5th half marathon last May. Running has since become difficult with me currently able to run about a mile before stopping because of my leg and fatigue. I ran my last 9 mile run in September and my last 3 mile run in November. Initially, I’d have to run a bit before the symptoms would start, but now they’re constant from the minute I step out of bed. Stairs can be tough because of my leg, but I can do them. Some days are better than others but there’s always a problem. My arm doesn’t bother me as much anymore. My right side is normal. As of January, I’ve noticed some problems with speech as well which is only noticed by me, but is amplified tenfold by a couple of beers to where I’m embarrassed to even talk. I’ve seen spots that I’ve been concerned were atrophy over my left hand, shoulder and thigh, but nothing clear and conclusive. I still have the fasiculations, but they come and go. I’ve seen 3 different neurologist including two with neuromuscular fellowships (last one at a large ALS center).
I’ve had MRIs of my brain and entire spine, spinal tap and extensive blood work. All of this has been negative except a small lesion in my left frontal lobe on MRI shortly after my symptoms started (new since previous MRI), which again was stated is likely of little significance.

I’ve had three EMGs/NCVs:
First done of my left arm and leg showing rare fasciculations and a mild motor conduction delay around my left elbow. This was marked off as normal, likely of no consequence.

Second of the left leg, completely normal.

Third of the left leg (at the large ALS center), a single fibrillation in one muscle and two isolated fibrillations in another muscle of my thigh. No fasciculations, no chronic denervation. Per the report, they could represent very early and mild left mid lumbar radiculopathies, but are likely of no significance. No further workup or follow up with them needed.

I can walk on my heels, walk on my toes and do all of the tests. My reflexes are “brisk but not pathologic” and I don’t have any of the bad reflexes on any exam. This is incredibly frustrating as I’m a 34 year old previously active father of three now limited by my left leg. I can’t run very far, it’s hard to carry my kids around and I can’t carry anything heavy and walk well because of my leg. The new speech stuff has me worried as well. I’m frustrated as things have turned up positive (esp. fibrillations) but no one seems concerned and I’ve been left in limbo.
Does this sound like anybody else you’ve heard of (ALS or otherwise)? Any other suggestions?

 

[Atsugi]

RR, thanks for including good details. I wouldn't worry about ALS if I were you. Three neurologists and three EMGs are pretty solid evidence. If there were ALS going on, they would have seen it, for sure.

Your voice and your left leg are the problems, of course. Forget about the twitching and fasciculations--they're very common in many conditions.

The way you describe your leg--you run and then you feel fatigued in the leg--that's just not ALS-type weakness. In ALS, as you might already know, the muscle isn't the problem. It's the brain. At first, ALS destroys a motor nerve in the brain, so that nerve cannot send a "go" signal to its corresponding muscle. Hence, the muscle just lays there, limp, paralyzed. It hasn't done any work, so it doesn't feel tired or fatigued--it just lays there, waiting for a signal to tell it to contract, but the signal will never come again, ever. Then the ALS moves to the next nerve and destroys it...

So while you definitely have a problem going on, it's not ALS.

Since the neurologists are stumped, see your GP medical doctor and let her lead the investigation into this.

 

[affected]

I'm no doctor but it doesn't sound neurological, so I second what Mike says - back to GP and start again. Unfortunately we only know ALS here, so are as clueless to what the next direction is for you. I hope you find some answers and a fix soon.

 

[lgelb]

RR, the focal weakness and speech difficulty after the virus raises several possibilities. I would seek a second opinion at a neurology center of excellence, making sure that you bring (in addition to your films, tracings and labs) and see a doc read, a single page summary of the succession you describe.

Best,
Laurie

 

[RRman]

Thanks for your time and prompt responses. The folks that saw the fibrillations were a large nationally recognized center and I laid out my history as above to them. They had no specific recommendations. Aren't fibrillations always bad? Aren't they always due to neuro problems? What is the relevance of isolated fibrillations and no sharp waves or abnormalities otherwise?

I will follow up with my pcp as well to see if there's anything else they can think of.

Thanks!

 

[Atsugi]

In general:
Are fibrillations always bad? Not at all. Healthy people can have them.
Are they always neurological? No. Could be a muscle disease, too. Could be from trauma.

But to apply these answers to your particular case. it all depends on what the EMG showed. Only the neurologist should be answering these questions, I think.