Old 02-22-2019, 02:41 PM #1 (permalink)
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Default Is this Bulbar PLS/ALS?

Hi so to start with Iím male age 26

So a few months ago I got rapid heartbeat tachycardia (I know not often a symptom of MND),
They found no cardiac explanation, then started getting muscle twitches which I still get sometimes, again no obvious explanation. I noticed a panting in my throat (you can hear it) which made me wonder if the problem was muscular.

After seeing neurologist, he said clinical exam was fine but ordered nerve conduction and EMG, that was also clean. The EMG was of limbs and tongue. Also had blood tests to look for protein caused by some muscular disorders and that was normal too!

I have a scalloped tongue and what looks like some tongue twitching.

Now Iíve noticed slight slurring, itís more effort for me to speak than normal and there is some slurring. Itís not like a drunk at a bar, others donít overly notice it but I do! My job requires lots of speaking so I know my own voice. Itís like my teeth donít fit my mouth. This seems to have been getting worse over a couple of weeks. Tonight while eating mashed potato I thought I was going to choke, it was like i couldnít swallow. I didnít choke or cough but I had to swallow a number of times and I tried it again and again, it kept happening about three times. I thought I might choke. Did have drink after which was fine.

Naturally Iím anxious thatís a given! Does it sounds like Bulbar ALs or PLs?? I know ALS can only be diagnosed when it effects LMN and UMN but does that mean the neuroís basically canít say unless it effects LMN? So they canít rule out PLS or PLS that could turn into ALS??

Donít know what to do as neuro and pcd donít take me seriously as just want to label it as anxiety! I donít know what it is but itís not that! Any help? Where do I go from here?
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Old 02-22-2019, 02:54 PM #2 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

I'm assuming they didn't prescribe anything for the sinus tach. I'd go back and ask about trying a low dose, assuming blood pressure is not too low for this. Calcium channel blockers like extended release diltiazem are frequently used for this purpose.

The reason for this: sinus tach can lead to a series of symptoms like you describe -- the body basically getting revved up for not enough reason, like hitting the gas pedal when your vehicle is not moving.

You might also record your breathing in sleep, with your phone, or ask your partner, if there is one, to listen, for gasping, irregular breathing, etc. Sometimes your breathing gets wonky in sleep and you need a machine blowing air to support you, or even a mouthpiece. That can also lead to what you describe.

So if you address the tach, you might address the rest -- it's worth a try. If you have a sleep breathing issue, and you address that, it will help.

If neither of those pan out, it would be time to address anxiety, under the same theory.

Clean EMG= no ALS, bulbar OR limb-onset. None. You haven't described PLS, either.

Best,
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Old 02-22-2019, 03:22 PM #3 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

Hi Laurie thanks for your reply, I appreciate all the effort that goes into replying on here and however long I’m around I want to help and fundraise to find a cure for the horror which is MND.

I was put on beta blockers for the tachycardia (proporanolol) which did bring my heart rate down although it is still higher than it previously was. I’m off that now. I’m also taking lanzoprazole in case my excess saliva was caused be GERD and have been taking that for a month without seeing any improvement.

I was referred to an ENT doctor and he looked at me and said you must be snoring a lot (my partner has said she hasn’t noticed though) and he perscribed me with 3 weeks of antibiotics for a sinus infection/issue without giving me much detail (I’m two weeks into them).

I’m trying to stay logical because I know clean EMG means no ALS but I also don’t see what could cause the slurring/swallowing issue that isn’t neuro in nature? Like I said I’m concerned PLS could do that? Especially as it feels like the muscles in my face/mouth just aren’t coordinating properly! I’m trying to keep the anxiety in check but a few months ago I was living a happy normal life and that seems to be changing quickly
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Old 02-22-2019, 04:54 PM #4 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

It doesn't make a lot of sense that propranolol for tachycardia would only be needed short-term, unless there were a short-term cause.

It's worth pursuing why the ENT said you must be snoring a lot, as that can suggest sleep apnea screening whether you have a sinus infection or not (as well as asking why he thinks you have an infection).

I and many others slur when we're tired. If you have diminished oxygen saturation in sleep, for example, that can affect your day, for sure. So that's just one example. Dry mouth, dehydration, chapped lips, the list goes on. Many reasons that are far from anything neurological. Pretend that you have been cleared of anything neurological (you saw a neuro who did just that, after all) and see how far that takes you.

You can go back to your PCP if anything new develops, as well.
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Old 03-07-2019, 04:40 PM #5 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

An update on the current situation. Since my last post Iíve still had body wide twitching (I know could be benign). Considerably sharp pain in numerous parts of body hands, legs, feet. Also had sinus infection (not cleared after 3 weeks of antibiotics). Iíve also had weakness in my legs they get shaky sometimes when Iím doing things! However am I right in thinking there is a difference between ĎweaknessĒ as we would say and what they call clinical weaknesss? And in clinical weakness one wouldnít be able to use the effected limb at all, It wouldnít be intermittent? I also have some vision problems but again I know these are uncommon in MND and makes me worry about MS.

What really worrys me most though is the swallowing issues Iíve had! Itís like I canít initiate a swallow. Iím not choking on food and drink as such of yet. But I notice it mainly on saliva itís like my mouth wonít start a swallow and it feels higher up than GERD or Globus would be. Itís as though my mouth just wonít/cantí initiate a swallow and I have to wait a few minutes till i can. I also get this strange pain at the base of my skull when it happens.

I know Iíve had a clean EMG fairly recently December and I know itís March now but I assume that still stands in terms of ruling out ALs.

What scares me though is UMN and PLS. Could this be the start of a UM dominant form of MND? Did anyone on here who started with UMN and PLS start this way? And do swallowing issues with MND come and go? Say could one take a drink and be fine then later be unable to start a swallow and then later that day or the next be able to swallow ok? Or is it purely progressive? Like once it starts? Itís every time and not hit and miss?

Also how is it possible to test UMN problems? Would this definitively show on a clinical exam? Even in the case of a bulbar UMN onset? I did have a clinical exam by neuro, was rushed and didnít focus on that region but would there be signs?

I know is lots of questions and I thank all who to take the time to reply. Itís just been driving me to my wits end not knowing whatís going on and disentangling symptoms, some of which could be linked to something as benign as a sinus infection to others which seem much more neurological.
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Old 03-07-2019, 04:53 PM #6 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

Yes. UMN is detectable during a physical exam. UMN damage is quite clear to an experienced neurologist. There is a very unique pattern to reflex/muscle response and gait, and various tests the specialist can administer (and no, you can't do them to yourself) to show abnormal UMN function. I didn't feel anything really different about my speech, swallowing or jaw muscles, but mild symptoms and abnormal responses were noticed by my general neurologist and one of the reasons why he sent me on to an ALS specialist.

If you are still struggling with your symptoms you must follow up with your doctor. They have your baselines, so can detect any changes, should there be any. They are also the only person able to actually provide you anything constructive with regards to diagnosis- the people here are just strangers on the internet. Posting your worries here doesn't actually do anything. You've already had multiple members provide you feedback and information, reassurance and advice, but you don't seem to be able to gain reassurance despite their efforts. Time to follow up with your physician and also address the overwhelming anxiety you are also experiencing as a result of your health concerns.
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Old 03-07-2019, 09:53 PM #7 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

I appreciate that and do understand all the effort that go into replying to these feeds. Of course I will go back to my Dr with the issues Iím experiencing.

But what Iím really trying to ascertain though is that when it comes to swallowing issues with bulbar, is it a liner process? Does a muscle go and then one simply canít swallow? Or is it possible particularly in the early stages for it to be intermittent even within a given day?

Thanks 🙏
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Old 03-07-2019, 11:19 PM #8 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

As your symptoms do not align with ALS, asking how bulbar progresses is really irrelevant.

Good luck in your diagnostic journey. All the best and take good care.
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Old 03-08-2019, 03:49 AM #9 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

Well the reason I was asking was to see if my swallowing patterns fit could within a pattern that could be MND related as it’s initiating swallow which is currently the problem.

Thanks for your well wishes though and thoughts and prayers to all on this forum
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Old 03-08-2019, 07:50 AM #10 (permalink)
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Default Re: Is this Bulbar PLS/ALS?

No. Slurring and swallowing difficulty are caused by significant weakness in the bulbar region, which is LMN, which would show up on an emg. Those are not UMN signs and you have not described a single UMN symptom (twitching is also LMN). So you have no concerns for PLS, and clean EMG means no ALS. You need to move on and look into other causes for your symptoms, which would have been more likely even before your emg confirmed no als.
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