U of M Visit

U of M Visit

Okay. First I was introduced to the EMG technician, Ross. 

 

He did the most basic introduction and took my vitals, then it was time for the neurology fellow, who is my primary on the case, to see me. I will call her Dr. Fellow, because she is in her Fellowship year. And guys...she LISTENED TO ME.

She actually carefully read over my timeline of symptoms/events etc., and asked insightful questions about it.

 

 

She did a full neuro exam from reflexes to finger-touch-nose to a whole bunch of shit. Reflexes, sensation, flicking my fingers and flexing various body parts. Much of which I kinda failed. My reflexes were pretty hyper, which I knew. Evidently I had many problems with temperature, sharp, vibration, awareness of location in space, all the things. (It could've been so much worse.) 

We spent like, 2 hours on this.

Then it was time for the EMG. 

Ross returns. He is a skilled and friendly lab tech. He does the first part of the study, which is the nerve conduction/velocity/whatever part. 

 

 

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They use the thing that to me, looks like the love child between a self-defense taser and a barbershop razor. 

This is where it gets interesting. He kept having trouble for some reason.

After a few minutes, a guy, we'll call him Zach, came in. I quickly learned he was a neurology resident who happened to want to see an EMG in progress because he didn't have much experience with them. He kept asking "Is that normal?" and Ross was like "Um....no." Then Zach kept asking more questions and the two of them kept attempting different things. After a while, Dr. Fellow comes back in and she joins the "WTH?" club. Zach leaves for a minute and then returns. Then, a minute later, another neurology resident appears in the room, announcing, "Hey, I heard there was a really interesting EMG going on in here." 

Me: 

 

I wasn't upset by this, I am a firm believer in education and if I can offer something new and interesting to people who are intrigued rather than dismissive, then great. But it was unnerving. I mean, there are times when you kind of DON'T want to be interesting. (Although, given how I'd been treated by many of the doctors up here, I was also relieved top find that no, this was definitely NOT in my head.) 

So everyone is asking questions/offering suggestions like "press harder", "check the electrodes", and my favorite, "turn up the voltage." 

Ross decides he needs an expert and leaves to get the head technician. Let's call her Debbie. Debbie comes in and is very friendly with me but also is very no-nonsense with the two residents. Debbie is helping Ross figure out the problem, telling him to press down on the electrodes while she turns up the voltage and pushes the button.

At this point it's been a while so - let's call her Dr. Small - the overseeing Clinical Professor - appears. 

It felt like that scene from Spies Like Us. 

 

And they all kept commenting on how interesting it all was. Ross was quite thrilled to have such an exciting and unique case to mix up his day and the residents were delighted to see something so weird and new. After a bit, Dr. Small allows the first portion of the test to be concluded and sends the two residents on their way so she can perform the second part of the test, which is where they stick the needle in the muscle and compare totally relaxed readings against flexed readings. 

For that test, things went swimmingly. (Not comfortably, but quickly.) Dr. Small has a sense of humor, because when I ask how things are going, she's like "Quite normal. In fact...unnervingly normal."

Me: PUN APPRECIATED.

Things are a bit more interesting when they do my lower half, but not as crazy as they were when attempting the first part on my upper half. 

 

They called Shawn back into the room and Dr. Small started manipulating my left leg, which is the one with the heavy limp. She asked me:

"Do you have significant lower back pain?"

Me: "Yes." (Mentally:  Duh. What gave it away?")

So. The reason they had so much fun with the first part of the EMG was because they couldn't get a measurable response from my nerves, no matter what they did. Which was why they kept doing different things, checking the machine and turning up the voltage. Because they would shock my nerves and although the arm would physically respond with a minor jolt, and I could kinda feel it, the nerves themselves would not show a response to the stimuli. So. That's fun. (Note: poor Ross kept telling me how great I did and how easy I was making his job and he kept apologizing if he was hurting me. And I was like "My dude, the electric zaps my body sends through my own system are so much worse than what you're doing right now. No worries.")

 

Dr. Small and I had this conversation: 

DS: So, you've never had a limp before this started?

ME: No.

DS: And any time you've ever had back pain before, it's resolved in a couple days?

ME: Yup.

DS: (Incredulous): So you developed sudden, persistent back pain severe enough to send you to Urgent Care and a limp at the same time and they didn't do any tests?

ME: Nope.

DS: And this limp hasn't gone away since it developed and neither has the pain?

ME: Correct.

DS: And they developed at the same time?

ME: (Nodding) 

DS: (Annoyed) And no one thought to put to 2 & 2 together and do more testing?

ME: Nope.

DS: Rolls her eyes.

ME: Agreed.

Which is why I am now scheduled for a 3D spinal MRI on the 13th of September. (It's being done up here, but on the order, it was very explicit about what she wanted and expected from the imaging.)

So they (at the time) suspected I had Charcot-Marie Tooth Disease,  and one of the rarest forms of the disease, to boot. (Blood tests would later conclude that no, in that regard I am normal and do not have CMT.)

We also discussed the fact that yes, there are multiple things happening in my particular problem soup. 

There is 100% an extremely pinched nerve in my lumbar spine, but until they get the results from the second MRI, they won't know the reason why. Is it from spinal stenosis? The herniated L5S1? Something else? Don't know yet. But they compared it to someone grinding their heel down on a hose to stop the water flow. Nice.

There is also evidence of damage in my cervical spine, but they don't know the cause yet because stupid people up here didn't send any actual images to U of M, just the radiologist's report. And if there is one thing I have learned, it's to not trust what radiologists report. (From my own experiences, not from other doctors indicating I shouldn't. I can do a post about this later on. For now, please enjoy this short clip by Dr. Glaucomflecken.)

 

  

 

 

And my neurologist seems to feel the same way. Like, great, you gave your report. Now I want to see the images for myself, dillhole.

It is currently suspected that the cause is another severely pinched nerve. It could also be a few other things. So they also need to see the brain/cervical spine MRI images before anything can be done.

There is also evidence of upper motor neuron degeneration. 

And that is a whole other can of worms. Because how much of it is UMN degeneration and how much is spinal damage? Are the symptoms of one masking symptoms of the other, or exacerbating them? Who knows?

 

Current Status: 

Scheduled for 3D MRI on: September 13. 

Next U of M appointment: October 12.

 

I am on an anticonvulsant which has helped calm the over-excitement of nerves. With it, my electric zaps have reduced significantly (I still get bad ones in my hands), my skin doesn't feel like it's on fire all the time, and of course, the seizures I've been suffering have also significantly reduced. (Still have occasional convulsions, but not nearly as many and not nearly as bad.) 

Leaving U of M, driving home, I told Shawn how, for the first time since I can remember, I have felt a sense of hope, of optimism. I genuinely don't know what's-the-what, but I have suspicions. However, assuming my limp is a hardware issue and not a software one - that would be amazing. The possibility that I could walk normally again. Honestly, it was something I had let go of and that hope is back. I might be able to walk normal again. And depending on what's going on in my cervical spine - well, I might be able to one day regain control of my hands. I may again someday be able to put a necklace on without help. These things are in the future and will require a lot of treatment - but the likelihood is there. I could walk normally again someday! And that is something to look forward to. 

 

 

 

Dr. Glaucomflecken <<<do yourself a favor and check this guy out. He's on youtube & tiktok

Original Nerve Image