Old 06-15-2018, 05:36 AM #16 (permalink)
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Default Re: Should ALS be on the table?

Thanks again, @lgelb. I'll certainly ask about other differentials at my consult. By then they will have both my negative LP and whatever comes of my EP study (which is today), so they should be able to render an opinion. I will try to drop by the neuromuscular clinic today after my EP to see if I can learn more, and maybe to expedite getting an appointment.
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Old 06-15-2018, 05:43 AM #17 (permalink)
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Default Re: Should ALS be on the table?

Hi Mike, and thanks again.

Yes, I don't put any weight on the "feels like" stuff, only the upper motor neuron signs which my neuro says are truly that. Sure they could be other things, but of course ALS or PLS would be the worst. I just don't understand why my neuro doesn't even consider them to be on the table.

Sorry that you lost your wife to this terrible disease, and sorry that you had to quit flying. There are new FAA medical rules btw, if you held at least a 3rd class medical since July 2006 and have nothing else disqualifying, BasicMed might work for you.

I love that placard! I think I've seen it somewhere, too. Blue skies and tailwinds!

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Old 06-23-2018, 11:35 AM #18 (permalink)
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Default Re: Should ALS be on the table?

Update: I received the report from my EP (evoked potentials) study on Thursday. There were significant abnormalities on the somatosensory part (SEP), basically no subcortical signals and considerable delay in the cortical signals. Since EP tests sensory nerve impulses only, I thought this tended to point away from MND, but another neurologist in the office said it really doesn't weigh in either direction. He said the findings could be due to anything, including old age. He also said that the findings would be very atypical for MS, so not likely that either. He thought I really needed an EMG, but would not elaborate as to what he thought should be in the differential. Unfortunately my neurologist is not there Thursday or Friday, so I will need to wait until at least Monday for a more detailed explanation.

The Impression for the lower extremity SEP did seem to say that the cause of the delay could be either peripheral or central, and that the findings would be indicative of CNS demyelination if a NCS study failed to show a peripheral neuropathy. I'm trying to hold onto that for the moment.

I took two long hikes this week and noticed that I am starting to have trouble with balance on uneven terrain and my right leg tends to shake a bit when I put a lot of weight on it during descents. Yesterday was especially bad, but my Wednesday hike was 8 miles and 2300 feet elevation gain, so it's possible I just didn't give myself enough time between hikes.

Is anyone here familiar with EP reports? Would there be any point in posting mine?
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Old 06-23-2018, 12:26 PM #19 (permalink)
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Default Re: Should ALS be on the table?

Evoked potentials don’t relate to ALS.

The fact you can hike 8 miles with 2300 feet of elevation strongly points away from a motor neuron disease. Those of us with MND are lucky if we can stand on our toes or heels and are lucky if we can take a few steps without falling.

Since you are still in the midst of a neurological evaluation, I would suggest you refrain from further posting until that evaluation is complete. We’re not here to try to soothe your every worry.
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Old 06-23-2018, 01:12 PM #20 (permalink)
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Default Re: Should ALS be on the table?

Karen, I am terribly sorry that my post offended you and of course, I will do as you ask. For the record I wasn't trying to brag about what I can do, but to indicate that I'm starting to have actual difficulty with things that I could easily do quite recently, that it's no longer just "feels like" stuff.

I was just looking for information about this test, and not for reassurance which I know that no one here can give me. I know that EP is not directly related to MND but wondered if someone might have had this test in their diagnostic workup. Obviously this was the wrong place to ask about this.

My apologies once again.
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Old 06-23-2018, 01:25 PM #21 (permalink)
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Default Re: Should ALS be on the table?

We do understand what you are saying. I am sure you can understand that physical activity is a very sensitive topic here as many of us were active and athletic. I cry when people talk about going to the gym

My sister had EP. testing. they were not looking for signs of ALS ( which they really knew it was going to be) but desperately trying for another answer for a young woman with a young child at home. It was utterly normal and my heart sank even though I expected it

Good luck and please let us know what your diagnosis turns out to bd
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Old 07-12-2018, 02:41 PM #22 (permalink)
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Default Re: Should ALS be on the table?

Just an update to keep the thread from closing. I hope this is okay, even though I do not yet have a definitive diagnosis.

I had an NCS + EMG two weeks ago to clarify the EP findings. NCS was really the indicated test, but my neuro offered the EMG to address my ALS concerns. Today I finally got the report. The main finding was a lumbosacral radiculopathy - "evidence of denervation with renervation in the R medial gastrocnemius (1+ Fibs, 1+ PSWs, with 1+ CRD and reduced recruitment) which suggests right-sided subacute S1-2 radiculopathy".

The assessment added that I had "absent peroneal motor and superficial peroneal sensory responses bilaterally" and stated that this is a common finding in the general population, so basically of no significance.

"There is no electrodiagnostic evidence to suggest motor neuron disease." Clearly a "clean" EMG from an ALS perspective, so I'm breathing sighs of relief!

I gather the bottom line is that the conduction delays were peripheral not central. My symptoms, both the perceived and clinical weakness, could be due to radiculopathy. But the UMN signs, assuming they are that, remain unexplained. Hyperreflexia is common and might be meaningless, spasticity is not. Ankle clonus? The neuro doing the EMG said that S1 radiculopathy can also cause it, or something that looks very much like it. I had never heard of this before.

My own neuro has not been in touch, and it has been over a week now since I called the office asking her to give me a call to discuss the results. This is getting frustrating.
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Old 07-12-2018, 03:17 PM #23 (permalink)
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Default Re: Should ALS be on the table?

It is true that radiculopathy can cause UMN signs. If S1 is the suspect area, you might at some point have a lumbar study to check for cord compression/correlate with the EMG-- the only MRI I see mentioned is C-spine.

At any rate, you're in the clear for ALS.
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Old 07-12-2018, 03:51 PM #24 (permalink)
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Default Re: Should ALS be on the table?

Thoracic was also done, no significant findings. But I thought the cord itself terminated somewhere around L2 ?? Do upper motor neurons extend beyond the end of the cord?

Believe me yes, I know I'm in the clear for ALS. And I appreciate everyone's help (and patience) on this site!
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Old 07-12-2018, 04:04 PM #25 (permalink)
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Default Re: Should ALS be on the table?

Yes, the cord terminates near L2, but it sends out nerve roots that exit lower down in the spinal column. So, an S1 radiculopathy affects the nerve roots exiting the spine at S1, even though these roots came off the cord higher up.

Think of it analogous to a horse’s tail — the hair fibers coming off the tail extend further down than the point at which the bone ends in the tail. The analogy is pertinent because there is something called “cauda equina” syndrome (literally meaning “horse’s tail”) which affects nerve roots at the base of the spinal cord below the area where the cord officially ends. There’s a bit of trivia for you.

Also, those nerve roots are lower motor neurons. The UMNs come from the brain and synapse in the cord.
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Old 07-13-2018, 11:32 AM #26 (permalink)
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Default Re: Should ALS be on the table?

Yes Karen, and thanks, that was my understanding as well, that the nerve roots below the conus medullaris are LMNs and that the UMN-LMN synapse is in the cord itself. That's why I have a hard time understanding how a S1 or S2 radiculopathy could cause UMN signs.

The other reason this surprises me is that I've known for a long time that I have advanced degenerative disease in the lumbar spine, and I specifically asked my neuro if that could account for my problem. She said no, and I'm pretty sure what she said was that the UMN signs localize the problem to the C-spine. That's why she was not surprised to see an apparent demyelinating lesion on my first C-spine MRI.

(And yes, I know a little about cauda equina syndrome - was worked up for it a few years ago when my lumbar diagnosis was first made. )

Anyway I need to get together with my neuro to discuss this in depth, and to plan out my next move - hopefully next week.
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Old 07-23-2018, 05:09 PM #27 (permalink)
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Default Re: Should ALS be on the table?

This will probably be my last update.

I (finally) got a call from my neuro on Friday: she concurred with my reading of the EMG report. The report rules out ALS at present and suggests a possible radiculopathy. There is no laboratory support for an MS diagnosis because the NCS showed slowing of conduction in the peripheral nerves - but that doesn't mean there is no central slowing, so that possibility is still on the table. But there are no further tests to do to either rule it in or out.

The bottom line is she doesn't know what to make of my results, other than that it's not ALS. Apparently i have a (mild, she said) lumbosacral radiculopathy, and that could account for most of my symptoms... but absolutely NOT the upper motor neuron signs, which point to something going on in the brain or, more likely, the cord. (She was quite surprised that the EMG neuro had said that S1 radiculopathy could cause clonus --- "no way!" were her words.)

She said that I could wait for and schedule the appointment with neuromuscular if I want since they might pick up something she missed. I'm still waiting for the callback but I'm inclined not to follow through there at this point because all of the diagnostic tests done at the hospital are charged at full rate, of which I pay a 20% co-insurance. I'm already on the hook for several $1000s and can't afford too many more tests, especially repeat tests which, she said, they will almost certainly want. She agreed that was reasonable and suggested that the best course then is to watch me over time and see if there is any change/progression.

So I wish I could wrap things up nicely and say not only, no ALS, but it was this, or that, and see everyone even when there are UMN signs and something clearly wrong, it isn't necessarily ALS. But I can't do that. It still could be UMN disease but unless it spreads to a new area, there is no reason to suspect that at the moment. Apparently whatever it is might become clear with time, or it might not. As my neuro said, sometimes neurological problems don't have clear diagnoses. I'm concerned but not terribly worried, as long as I can still do all the things I've always been able to. If that changes, or a future exam shows anything new or concerning, then I'll of course feel differently!

Best of luck to everyone here, and thanks again for all of the helpful information.
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Old 07-23-2018, 05:31 PM #28 (permalink)
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Default Re: Should ALS be on the table?

Sounds like a reasonable plan, DayHiker. We'll continue to hope that your condition stabilizes or improves.

Since there doesn't seem to be a current neuro lesion that explains your symptoms, you might also think about palliation at this stage, like any nutritional/supplemental tweaks that could affect your R arm's/R leg's response to being taxed, and your sitting/standing/sleeping positions as well. Even things like insoles could possibly mediate post-lecture fatigue.

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