Old 05-05-2018, 09:26 AM #1 (permalink)
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Default Should ALS be on the table?

First I want to thank the administrators and moderators of this forum for providing this resource despite battling a terrible disease. I send all of you much respect and admiration. I have read the stickies in this forum and will try to abide by all of your rules.

My situation is that I am being seen by a neurologist for an undiagnosed condition that seems to be localized to the C4 area of my cervical spine. My physical signs so far are restricted to my right leg and arm and are: hyperreflexia in the knee, ankle clonus, and general spasticity and hypertonia in both limbs. My neuro also told me at my last appointment on Tuesday that I have some weakness in my right hamstring, but that this is consistent with the other UMN signs. She says that I have absolutely zero signs of LMN involvement: no fasciculations, no atrophy, and no muscle weakness other than the hamstring.

My symptoms started in early June 2017 with subjective weakness in my right leg, a feeling that my foot was going to "give" at the ankle. I am also a private pilot, and noticed a couple of times that when applying the brakes while running up the engine, my right foot would begin to shake uncontrollably. I had to adjust the seat position to prevent this from happening. I knew from reading that this was likely clonus and immediately started the process toward being seen by a neurologist. My first appointment was in September 2017 and bloodwork was immediately ordered, all came back negative: B-12, Lyme, Vitamin D, thyroid. Her dx was C-spine myelopathy, possibly due to cervical stenosis.

MRIs of the cervical and thoracic spine were done in November. The thoracic was negative, but the C-spine showed a small lesion around C4 that was "suspicious for demyelination, possibly due to MS". My neuro said she suspected I had had an attack of transverse myelitis. The only question was whether it was "clinically isolated" or part of something more widespread like MS.

A brain MRI in December showed only nonspecific white matter changes, but no clear signs of MS. Nevertheless, my neuro has always said that MS was on the table.

But she said from the outset, and still maintains, that this is definitely NOT ALS and almost certainly not any form of MND. Partly I think this is because she found I had decreased vibratory sense in my right leg and frank numbness between the toes of my right foot. I also have electric shock sensations in the sole of my right foot after hiking, though it's not clear whether this is related. Mainly, she says that if this were ALS, I would have some form of disability by now. It is true that I can still do everything I could, though I have some cramping and tightness in my leg when I walk and my right arm tends to go into spasm when working at the computer (last few days especially). I'm a professor and find that after lecturing for an hour my right leg feels like a piece of wood and I need to sit down. But I have had no falls due to weakness, no foot drop, and no muscle failures. I continue to walk to work and for exercise and hope to return to hiking as soon as the mud on the trails goes away.

The real shocker is that I had a followup C-spine MRI in March to document any progression of the lesion. The report said that there was no sign of the earlier lesion and the radiologist suspects that it was an artifact. My neurologist disagrees and says that the imaged lesion explained my symptoms so perfectly that she believes it was an inflammatory lesion that has resolved. She says that spasticity can continue to progress for months and even years after an insult to the spinal cord has apparently resolved.

I am concerned that she may be suffering from confirmation bias.

She has me scheduled for a lumbar puncture on the 16th, and an evoked potentials study has still to be scheduled. She considers doing an EMG "very low priority" but did say that if the LP and EP come back negative that she will recommend that I get a second opinion. She says that I should probably go to an MS clinic but would be okay with my going to a neuromuscular clinic if I prefer.

My questions are:

1. Am I being unreasonable to question my neurologist's conclusions?

2. Has anyone here gone on, from purely UMN signs with no real disability for more than 9 months, to an ALS diagnosis?

3. Should ALS be on the table here?

4. Should I be pushing harder for an EMG or neuromuscular consult?

Sorry for the length of this, and thanks in advance for reading.
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Old 05-05-2018, 09:53 AM #2 (permalink)
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Default Re: Should ALS be on the table?

Are you getting worse? If so, clinically or subjectively?

It sounds as if your doctor is moving forward with tests.

I would see what comes from the tests and then get the second opinion as she recommends.

There are people who start with upper motor neurons findings and then develop lower motor neuron disease and get a diagnosis yes. Are they usually at least somewhat disabled by their UMND at that point yes I believe so.

I don’t think it sounds like ALS is the top of the list here but do not know if it should be on the list at all.

See above comment. I think you should have the tests planned and then the second opinion. The lp is less than 2 weeks away. If you have no answers it sounds as if she will refer to neuromuscular if you choose. A couple of weeks one way or another make no difference with ALS or PLS. Time is more critical for MS treatment I think
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Old 05-05-2018, 10:31 AM #3 (permalink)
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Default Re: Should ALS be on the table?

Thank you for the reply Nikki. I'm certainly going to go ahead with the tests and take it from there. It does sound very strange but I am hoping that they show MS-specific findings as that would take ALS off the table again for me. I was relieved when the MRI showed a lesion as I know that ALS would not, but to me it seems we are back to square one now.

I am getting subjectively worse, yes. More stiffness in the right leg as I walk, now tightness and muscle pain in the arm at the computer, a feeling as if I'm overusing the muscles, both the bicep and in the forearm. I don't think my gait is visibly affected even though I feel it. Clinically, I'm really not sure. My neuro says no, that she has seen no progression since September. But the indication on the first MRI said hyperreflexia and spasticity in the right leg, on the second MRI it said "now with hyperreflexia and spasticity in the right arm". I don't know if she simply left that off the first time or if the exam didn't show it until February/March. I did not read the report until after the appointment so it would be difficult to ask her now.
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Old 05-30-2018, 10:01 AM #4 (permalink)
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Default Re: Should ALS be on the table?

Update (mostly to keep this thread from closing automatically): my lumbar puncture was two weeks ago, and finally yesterday I got the result that it was negative. No oligoclonal bands, no excess cells, protein within normal limits. The neuro is away all week so I don't have an interpretation yet, but from what she said before I doubt that she will consider MS ruled out, or MND a possibility, even if the evoked potentials test comes back negative as well. EP is scheduled for the 15th.

At this point I'm looking for something to hold onto as things seem to be getting very slowly worse. I've had steadily increasing tightness in the right leg. Although I can still hike, I keep getting delayed onset muscle soreness in that leg that lasts a couple of days afterward, which is very unusual for me after the first hike of the season. My right arm also gets tired when holding it above my head for a while, such as when shampooing my hair in the shower, which never used to happen. I have a constant spasm on the outside of the right thigh that makes it hard to walk first thing in the morning, though it goes away in a few minutes.

Is all of this this consistent with MND or does it point to something else? The one thing I am aware of that clearly points elsewhere is electric shock sensations in the sole of my right foot after long hikes, but that started two years ago so it isn't clear it is even part of the same picture. At my age (63) I could have multiple things going on. My neuro did say the electric shocks were most consistent with demyelination.

Again, for reference, my symptoms (subjective weakness, clonus, hyperreflexia) really started mid June of last year.
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Old 05-31-2018, 02:56 AM #5 (permalink)
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Default Re: Should ALS be on the table?

I would agree with Nikki that ALS is far down on the list.
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Old 06-06-2018, 02:01 PM #6 (permalink)
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Default Re: Should ALS be on the table?

So I just spoke with my neurologist... as I expected, she does not consider the negative LP to definitely rule out MS. Her opinion is that it could still be MS, or some other inflammatory process in the spinal cord that may even be resolved (as per the negative repeat MRI). She thinks I would really be wasting my time to go to a neuromuscular clinic but is willing to refer me "if you would be torturing yourself over it". So I asked her to set up a referral, and then I will see what the results of the EP are which will probably come back before my neuromuscuiar appointment. Then I can cancel if they are positive for MS or point strongly in another direction.

My question is: which clinic to go to? I have my choice of either UVM Hospital (University of Vermont) or Dartmouth-Hitchcock. Being in north central Vermont, UVM is a little closer but they are both within easy driving distance. Is one better than the other for motor neuron issues? Does anyone have experience with either?

Thanks in advance.
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Old 06-06-2018, 02:39 PM #7 (permalink)
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Default Re: Should ALS be on the table?

They both look decent, with Dartmouth of course more pedigreed. Why not call both and see what the availability is for each/how well you click with whoever you talk with? That might decide the issue.
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Old 06-13-2018, 09:40 PM #8 (permalink)
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Default Re: Should ALS be on the table?

I decided to go with UVM because they may ask for another MRI, which is nearly $1000 out of pocket with my insurance if done in hospital. UVM works with Vermont Open MRI - I've used them before so I know the records transfer smoothly.

I saw my PCP yesterday for a non-motor neuron issue and we spent some time discussing my neuro's thinking, since he has access to her notes. He said that the reason she states for being so convinced that my UMN involvement isn't any kind of MND is because the hyperreflexia with MND is nearly always much more pronounced and clearly pathological (I gather typically 4+), while mine is definitely hyper on the right side (patellar) but not that extreme. The main reason she told me it is significant is because it's asymmetrical, the left side is much less.

Is this consistent with everyone's experience? Hyperreflexia in MND is beyond brisk to clearly pathological? This would give me a little more confidence in her thinking if it's true, though I'd still wonder why she didn't just tell me that.
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Old 06-13-2018, 10:02 PM #9 (permalink)
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Default Re: Should ALS be on the table?

Usually, yes. Brisk reflexes might be completely normal, way too brisk not so much. My reflexes were brisk for a while, then started getting worse, brisker, until I had clonus (4+) in both knees and ankles. Also leg spasticity. And asymmetrical Hoffman's sign, now in both hands. MND hyperreflexia usually involves multiple areas of the body, biceps reflex, brachioradialis reflex, etc are also affected. In my case, all hyper-reflexive (3+).
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Old 06-14-2018, 01:19 AM #10 (permalink)
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Default Re: Should ALS be on the table?

Igor makes a good point. The hyperreflexia in ALS/ MND evolves over time, just like the weakness. I started out brisk in my knees and ankles but fairly normal in upper extremity reflexes. Over time, these latter reflexes became brisker. I still donít have clonus. Iím not sure the degree of hyperreflexia is as important as the evolution over time.
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Old 06-14-2018, 09:27 AM #11 (permalink)
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Default Re: Should ALS be on the table?

Well that's not very reassuring, but information is always a good thing to have. So it seems that on yet another point, my neuro is relying on "facts" that may not necessarily be so. On the other hand, my hyperreflexia does not seem to have progressed in severity since last summer, so maybe that's a good thing... the problem is that my neuro's notes and what she says to me in person don't seem to always agree. I'm still not clear on whether she detected hyperreflexia in my right arm straightaway in September or whether that's a new finding since February. It appeared for the first time in the "indication" for the second C-spine MRI I had in March. And in September she said I had no clinical weakness, then recently she told me that I have some weakness in my right hamstrings but that it was there from the first time she saw me. Very confusing.
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Old 06-14-2018, 03:07 PM #12 (permalink)
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Default Re: Should ALS be on the table?

DayHiker,

I'm thinking real hard on on you wrote, and I see a LOT of things that point AWAY from ALS. 90 pct of what you wrote just reassures me that ALS is no where in sight.

Cartwheeling at the beginning of a rollout could run yer hole day, tho. I'd focus on that right hammie. Good luck.
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Old 06-14-2018, 04:25 PM #13 (permalink)
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Default Re: Should ALS be on the table?

Umm... well at the distance I sit from the pedals, my quads deliver most of the force not the hamstring. I'm very careful though, especially during runups, because of the tendency toward ankle clonus - that's the first thing I noticed that alerted me that something was wrong.

Could you be more specific about what points away from ALS? The only thing I see is the electric shock stuff, which could be unrelated.

Mike, those look like David Clarks you're wearing in your profile picture. Are you a pilot?

In any case thanks for the reply, it is much appreciated.
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Old 06-14-2018, 05:07 PM #14 (permalink)
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Default Re: Should ALS be on the table?

1) Weakness and hyperreflexia would not be expected to stay in lockstep.

2) The "grade" of hyperreflexia is not consistent across PALS, as Karen notes. Some never exhibit it, more do not exhibit it at onset. For some, the extent and areas affected is more than others. Asymmetry in any respect (weakness, clonus, hyperreflexia, etc.) suggests a local or nerve problem more than a systemic problem, but that local or nerve problem does not have to be ALS.

3) I would make sure that the brief at UVM is to address the possibility of MS and other differentials, not just to rule out ALS. In other words, it should be a diagnostic second opinion.
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Old 06-14-2018, 07:47 PM #15 (permalink)
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Default Re: Should ALS be on the table?

Hey again, Hiker.

If you go through your posts and delete everything sensory: feeling, feels like, felt weak, etc, your posts boil down to things that are common in other conditions. I include being 63 as a "condition," BTW. (I'm 62. )

Thanks for noticing the avatar. It's the only one where I don't look fat.

I was Navy ELINT operator aircrew on carrier-launched EA-3Bs back when there were actual commies to watch. Later PIC on C-150, 152, 174 and Pipers. During service I had the opportunity to do some aero in T-37. The avatar photo is from a T-6 ride my wife bought me for my birthday: loops and rolls and stuff.

After wife died of ALS, I thought I'd start a new career as a for-hire helo guy, but the FAA didn't like the anti-depressant I was on at the time, so I had to quit flying entirely. (I cry daily now...just kidding.)

Flying is da bomb. I know you love it and it is a big part of your soul. I'll never forget a placard I saw in a hangar once:

Because I fly, I laugh more than other men.
I look up and see more than they.
I know how the clouds feel, what it's like to have the blue in my lap.
To look down on birds.
To feel freedom in a thing called The Stick.
Who but I can slice between God's billowed legs and feel them laugh and crash with His step?
Who else has seen the unclimbed peaks?
The rainbow's secret?
The real reason birds sing?
Because I fly, I envy no man on earth.
– Captain Brian Schul, SR-71 driver (plus 212 missions over VN in a more humble jet)
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"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

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