Trying to cover my bases.

[zigglerocks]

Hi there. Firstly I'd like to commend this entire community...what an amazing network for people suffering from this terrible condition, both personally or through a loved one.

I'm posting because my 26 year old husband has been having some baffling medical problems for the past 2 years and I'm becoming concerned, but I want to emphasize that I'm really trying not to be irrational about anything. Hysteria isn't helpful! But we have two very young children, he is my best friend, and I want to cover all my bases.

Two years ago, hubby began having bad lower back and leg pain. He was never in extreme sports, never traumatized his spine. He golfs occasionally, that is about it. Over a period of six months or so, it not only became more intense but also seemed to move down and concentrate specifically in his right leg, particularly the calf. He described it like...severe muscle cramping, like his tendons were pulled taut.

We went the basic, excruciatingly drawn out treatment route, and eventually, by early 2012, we'd determined he had degenerating discs, a few mild herniations in the lumbar section of his back, with one that looked like it might be pressing on the nerve roots. He had a microdiscectomy on the L4-L5 and the recovery was fantastic! A 75-80% pain/discomfort decrease, etc. We were happy, life resumed as normal...


...and then, about 2 months ago, he woke up morning saying his right foot was asleep. It never "woke up" - he developed an abrupt foot drop in the right leg, stumbling and high stepping all over. We returned to the neurosurgeon, re-MRI'd his back, and there were no significant findings - clearly, his discs are desiccating and slightly herniated in the lumbar region, but nothing definitively explaining the sudden loss of sensation/upward mobility. Nonetheless, he scheduled him immediately for another minor surgery, to decompress the worst of the areas in hopes it'd help. Before we could do this, however, his LEFT foot drops (this was 3 weeks ago). He came home to me scared to death that he was going t have a stroke or something. I am very concerned at this point but struggling to keep calm.

Neurosurgeon cancels the surgery, schedules an EMG nerve conduction test. We did this three days ago. We are still waiting to have our follow-up with the neurosurgeon, but the doctor who conducted the test said...his peroneal nerve from the calves down are quite weak, and the muscle there is "very agitated" whatever that means. He said such abrupt foot drop is strange, especially bilaterally, and mentioned hereditary disease could come into factor.

He is currently wearing AFO braces on both legs to keep him from falling on his face.

I was very recently (like today) informed by his family that a great uncle of his (paternal) passed from ALS. It put my stomach in knots just to think of it.

SO. My questions are:
- does it sound like my husband could legitimately be displaying early signs of limb onset ALS?
- what should I be asking these doctors in regards to ALS moving forward? Are there specific tests or blood panels he can do? They have not mentioned it at all and I don't want to sound like a hypochondriac (refer to question 1).

I am really trying not to jump to crazy conclusions, but honestly the degree to which our/his lives have changed in the course of 2 years makes my head spin. We are young and relatively healthy individuals, and I cannot for the life of me explain what is going on with my husband's debilitations but I know it just doesn't seem "right."

I don't want to stress, but I want to be as informed as I can if this is a real possibility. Thank you so much for your time, my gratitude for any insight/opinion is yours.

 

[Nikki J]

I am so sorry for all you are going through and commend you for doing such a good job of staying calm.

I hope you get the results of the EMG soon. If heaven forbid the foot drop is caused by ALS it would show up on the EMG.

I don't think I have heard of ALS starting with such dramatic foot drop bilaterally in such a short time frame.

I am sorry to hear of the one ALS case in the family. Most ALS is sporadic and if there is just the one case until proven otherwise consider it sporadic which means your husband at his age is at low risk for ALS. I hope you can get the EMG results very soon keep us posted
Nikki

 

[vickim]

Sorry for the trouble your husband is having. I will pray that the outcome of the emg is a good one. There is no one test to determine a neuro problem. It is a process of elimination. The saying here is when all other options are exhausted it is als. So, try not to worry until you have to. Be patient, and we all know how hard that can be. Some here waited months, years and some are still waiting for answers.

I hope that is not the case for your husband but be prepared. The emg is a good indicator of als. But a lot of neuro diseases mimic each other that's why all the testing and waiting. I am wishing you strength and love.

 

[hjlindley]

This is not an easy journey, especially with kids. One of the markers of ALS is that it is asymmetrical. Mine started in my right hand and left foot. Let's hope the EMG gives answer and I think you're being smart by trying to keep the extreme emotions under control.
Good luck to your entire family
Hollister

 

[Barbie]

I hope the sudden onset of asleep foot/foot drop is just a sign of something going on with the discs. It doesn't sound like something that happens in ALS, but you never know. Try not to worry too much I am sure your husband is very scared right now. If I were you, I would stay off the internet and don't read about ALS, it will make you sick to your stomach with worry. Just wait for the results of the EMG and nerve test. That is easy to say and hard to do--but please try to stay calm for your husband and children's sake.

If he is given the all clear, then really do not worry about it being hereditary--95% of all ALS is sporadic and not passed on.

Good luck and let us know the outcome.

B

 

[Annie's Phil]

ALS symptoms develop gradually as the motor neurons die. Muscles get progressively weaker as the number of innervated motor units decreases. Sudden onset is characteristic of nerve damage due to trauma, not degenerative nerve disease. Numbness is not characteristic of a motor neuron disease, although as the disease progresses changes in sensation can take place.

Central disk herniation can produce bilateral symptoms. If he develops bladder or bowel problems then immediately get to a hospital. Central herniations in the lower spine can press on the cauda equina (lower section of the spinal cord) and cause permanent loss of bladder or bowel control if not decompressed quickly.

The peroneal nerve is most frequently damaged at the knee. Compression can come from something as simple as habitual leg crossing. L5 nerve root compression and compression of the peroneal nerve look very similar.

You used the term "emg nerve conduction test". Did he have both an emg and a nerve velocity conduction test? The "agitated" nerve is a term that would arise from an emg and indicates a level of denervation. It's true that als causes denervation, but so does nerve trauma, e.g., disk compression. A nerve velocity conduction test can isolate the location of a nerve compression if that's the cause. So if the nerve conduction velocity is normal above the knee, and slow below it, that would indicate a lesion on the nerve at the knee.

How are his reflexes?

There is a saying, "When you hear hoof beats, think horses, not zebras." Rapid onset and numbness argue strongly against ALS. Your husband has a history of L5 compression and general lumbar degenerative disk disease. Bilateral symptoms at the same level would be consistent with a common cause from spinal compression.

I think it's very unlikely that he has als. My major attention would be looking out for symptoms of compression of the cauda equina.

Grace and peace to you.

 

[zigglerocks]

Thank you everyone for the thoughtful responses! I'm extremely appreciative.

In my heart of hearts, I don't believe he has ALS, but the news about his relative passing from the condition really struck some fear into me. I'm still going to bring the issue up to the neurosurgeon next we see him, just so he is aware, since it's never been discussed previously.

Annie's Phil - yes, he has a nerve velocity test done as well, but the doctor didn't delve too deeply int the results as we were sitting there, just saying the velocity was decreased. To be honest, I wasn't a huge fan of that doctor (he wore his sunglasses the entire time he conducted the EMG. :| ), but I gotta think he would have spoken up if there was some really funky reading on his tests. I am definitely going to grill our neurosurgeon more about the results when we see him next week.

Again, thank you everyone for your time and opinions. I will certainly keep everyone posted as we move forward through this medical journey, and I wish everyone here the best of luck with their own.

 

[Annie's Phil]

Decreased nerve conduction velocity definitely points away from ALS.