The waiting is the worst

[AliCP]

In June my 45 year old husband called from work and asked me to come pick him up. He had gotten behind at work and had stumbled. He was off balanced (but not dizzy) and couldn't walk a straight line. His job is physical and with a large company and they did not want him to drive home. They said that he could not return to work until he could walk the line straight.

He had been having problems for close to six months staying caught up and occasionally taking a stumble at work. He had been complaining for awhile about weakness in his right hand and neck pain. I had noticed for several months that his calves twitched when he was napping in the recliner. There was another time when he lifted his shirt to show me that the muscles in his stomach were visibly twitching. He is also having some cognitive issues and tends to have trouble remembering things. This has been going on for several months.

So soon after the incident at work he had a cervical MRI and they found a herniated disk at C6 and C7. His general practitioner referred him to a neurosurgeon and away we went. The neurosurgeon was concerned and did not think that the herniated disks were causing the hand weakness, twitching, or the balance problems and so he ordered an MRI of the brain and an EMG. He also ordered a block to help with the pain/ disk problems.

Fast forward to last week when we went back to the neurosurgeon to get results of the EMG and talk about the failed cervical block and learned that the MRI of the brain was normal. He said that he thought my husband had two separate issues going on... 1. The disks which he recommended surgery to correct. 2. A suspected Motor Neuron Disease which he suggested he see a neurologist for.

My husband will have surgery tomorrow on the disks. And we are waiting to see a neurologist so we can get more answers. My husband swears that the disk surgery will completely heal the other issues as he thinks it is all related. We can't see a neurologist until the very end of September and I'm frustrated at having to wait. The waiting is the worst.

I have attached the EMG and have googled the poor thing to death. I'd love some straight talk from anyone with any ideas or suggestions.

 

[lgelb]

His EMG doesn't suggest ALS, but it was a somewhat limited study considering his history. As noted, there is no evidence of chronic denervation as we would expect to see in ALS, especially with the length of time you mention. If the MRI was only of the neck, it was not powered to see all of the spine that might have compressed cord (radiculopathy) that the report reflects the EMG looks like. Honestly, I'm surprised a full thoracic/lumbar spine study wasn't done before this surgery.

The surgery is under the assumption that at least part of his problems can be attributed to the herniated disks that scans do not always see all the way around; sometimes disk fragments can obscure the cord itself. The procedure itself will possibly reveal more, but I would certainly ask for full spine imaging afterwards, as would appear to be indicated.

All in all, this seems like pretty rapid onset of several things that sometimes relate to ALS but often not (loss of balance, cognitive issues, etc.), and these are things that we can't lay off on the spinal cord. That further reduces the probability of ALS being an issue, though it is not zero. It also suggests that despite your husband's hopes, surgery is unlikely to fix everything.

Is the neurologist he will be seeing a neuromuscular specialist? Will this be at UAB? Is that where he's having the surgery?

I hope the surgery goes well.

Best,
Laurie

 

[AliCP]

Thank you for responding. The surgery went well and the surgeon said everything went as he expected. His surgery was at Grandview in Birmingham. We are working on getting an appointment with a neuromuscular specialist at UAB. I have a friend who works in the neurology department there and hopefully we can see someone before the original appointment we were given in October. The September date is with a neurologist at Grandview. I am calling daily to see if either of them have a cancellation. I'm not very good at waiting.

The EMG was limited to the right arm, I don't understand why but I'm sure there will be another coming in the next little while. I think getting a thoracic/lumbar MRI will be helpful going forward. Whatever it takes to get answers. The neurosurgeons words were that the Nerve conduction/EMG showed that his "nerves were touchy" (whatever that means) and that he wanted him evaluated further because he suspected MND. I knew from the first appointment that the neurosurgeon suspected MND because of some of the questions he asked as he examined him.

Looking back everything really started last summer, or maybe last spring. The pandemic has my time orientation off. He doesn't really complain and tends to try to "push through". I think he has been "slow" at work for awhile. He can't keep up and has been beating himself up for getting behind. Last night I made him try to stand on one foot and he can't. He can't stand on his toes at all but could on his heels for about 10 seconds. His right hand is so weak he can't pump his shower gel/soap or hold a cup. He has no pain (except in the neck), tingling, or numbness... just weakness. The stumbling has gotten worse. He trips a few times a day and I'm just waiting for him to fall. I know something is wrong. I pray that you are right and that it's not MND. I just want to know what it is...

I hope we are moving in the right direction. I assume that seeing the neuromuscular specialist at UAB would be the best thing at this point?? I really don't know anymore. I really wish that in a few weeks all these symptoms were magically gone and that the surgery fixed everything. But I'm not counting on it... Is there anything we should be doing that we aren't already doing? How do we move forward?

 

[lgelb]

Yes, the neuromuscular specialist is the best next step. As I said, I can't guarantee it's not ALS, and it seems definitely something. But there is a lot of territory between 0 and 60.