Does bulbar onset always start with slurring?

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Does bulbar onset always start with slurring?

Postby Xina535 on September 14th, 2014, 7:27 pm

Or does it usually start that way?

I am prob just experiencing my symptoms due to either gastritis/worsened gastritis or anxiety or a mix of both....but they are now this:

A couple days ago, my voice changed pitch all by itself as I talked, no matter what I did to try to help. Not a sore throat or anything, to me it was strict vocal cord problem. Happened constant for 2-3 days. Happening now on occasion.

Swallowed food today, it got stuck, needed lots of water to get it down. Not sure it's even down yet all the way, kinda hurts in the bottom of the throat.

Right hand, what seems like subcutaneous fat loss on my thumb (docs confirmed right hand has gotten smaller, but others believe it's not muscle atrophy), with weakened grip (mainly from thumb).

Random widespread twitches, including a couple in my right hand/thumb.

No slurring, no drooling, no breathing issues, no twitches in mouth/tounge.

Of course, I'm a mess wondering about you know what, bulbar issues. But if all that usually starts with speech slurring, then I can maybe rest my nerves a bit (which is crucially needed).

Stuck in US until 28-Sep, when my insurance/docs are in Germany.
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 14th, 2014, 11:30 pm

Xina,
I have GERD for many years and what happens to me sometimes is a sudden onset of husky voice. Just sudden - it comes in acute way and slowly resolves with a bit of coughing/throat clearing. Last one issue had happened 3 days ago. During this events I also can not keep my voice celar and evenly pitched for a while. But it is usually resolved in few hours.

Another issue I have in bouts is an acute spasm of pharingeal musculature. They are extremely painful and cause involuntary tearing on one side (related to pain), and also my voice becomes abnormal due to constriction of vocal cords. Again nothing abount MND but rather caused by too deep breathing and cold air from outside causes this reaction in VC (as my vocal teacher had explained to me). We all know that we can do this deep breathing invountarily due to anxiety (hyperventilation).

Sometimes it happens that we have a spazms in a throat/esophagus, also due to GERD. It MAKES an appeareance of food stuck in the throat or esophagusIt, and it is extremely painful by the way. Pain could last for hours, and the feeling of the food stuck in there also lasts for hours. In such case a dose of antacide helps a lot.

As for the hand/grip weakness and 'atrophy', if you have veins/tendons more prominent, it is fat atrophy. Real muscle atrophy 'eats' a buldge of muscle formed at the top side of the had (opposite to palm) if you press your thumb to index finger. If that area is flatened, or has significant decrease, this is a warning sign. The most common cause for grip weakness (if not perceived one) is a compression syndrome. Depending on the location of compression (elbow or wrist) it may be relevant to pinky/ring/middle finger or vice versa to thumb/index/middle finger. Usually therer is quite a pain in a wrist or elbow.

bulbar onsets may start in maby different ways (I read here a report about sudden abrupt loss of speech, loss of ability to swallow liquids, slurring, inability to project voice (deliberately change fron low to high)? inability to eat at a normal rate due to difficulties in chweing/swallowing (typically it is described as two hours to eat a sandwich) etc. But yours seems to be still GERD-related to me.
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Re: Does bulbar onset always start with slurring?

Postby Xina535 on September 15th, 2014, 10:45 am

Thank you Yuliasir for writing! I have been thinking of you, hope you are well!

I have GERD for many years and what happens to me sometimes is a sudden onset of husky voice. Just sudden - it comes in acute way and slowly resolves with a bit of coughing/throat clearing. Last one issue had happened 3 days ago. During this events I also can not keep my voice celar and evenly pitched for a while. But it is usually resolved in few hours.


Ok so, this is very similar, only my voice changing happened over a couple of days. It is normal now though.
What kind of doctor do I need to go to for GERD tests? Is anything determined in the blood, like certain levels high or low?

Another issue I have in bouts is an acute spasm of pharingeal musculature. They are extremely painful and cause involuntary tearing on one side (related to pain), and also my voice becomes abnormal due to constriction of vocal cords.


I do not have severe pain, not even moderate pain. Just a discomfort, like there is a pressure when it feels like the food is stuck. I do get these random loud hiccups (been happening for months) that sometimes are painful, but not severe. They are usually just one big one, at random points throughout the day. Is this maybe the spasm of pharingeal muscles like you mentioned?

Again nothing abount MND but rather caused by too deep breathing and cold air from outside causes this reaction in VC (as my vocal teacher had explained to me). We all know that we can do this deep breathing invountarily due to anxiety (hyperventilation).


I AM in Minnesota where the air is cold and dry compared to hot and humid Florida.

Sometimes it happens that we have a spazms in a throat/esophagus, also due to GERD. It MAKES an appeareance of food stuck in the throat or esophagusIt, and it is extremely painful by the way. Pain could last for hours, and the feeling of the food stuck in there also lasts for hours. In such case a dose of antacide helps a lot.


Ok, so maybe this is the one loud hiccup I have. ?

As for the hand/grip weakness and 'atrophy', if you have veins/tendons more prominent, it is fat atrophy.


Ok, if fat atrophy, what causes that!?!? I have no idea! And could GERD cause that?

Real muscle atrophy 'eats' a buldge of muscle formed at the top side of the had (opposite to palm) if you press your thumb to index finger. If that area is flatened, or has significant decrease, this is a warning sign.


This worries me, since on the back side of my hand (opposite of palm), there is a dent, which everyone says is not atrophy, but I am obsessed with it. On top of that, if I compare my hands now from back in April or so, it does seem the muscle is less bulky. May not be any issue, but it's making me crazy, since I do have the weakened grip.

The most common cause for grip weakness (if not perceived one) is a compression syndrome. Depending on the location of compression (elbow or wrist) it may be relevant to pinky/ring/middle finger or vice versa to thumb/index/middle finger. Usually therer is quite a pain in a wrist or elbow.


My verve tests have been normal. How do I know if it's a compression? Should to orthopedic doc do some xrays or what?

bulbar onsets may start in maby different ways (I read here a report about sudden abrupt loss of speech, loss of ability to swallow liquids, slurring, inability to project voice (deliberately change fron low to high)? inability to eat at a normal rate due to difficulties in chweing/swallowing (typically it is described as two hours to eat a sandwich) etc.


So there is no usual pattern such as slurring happening first?

But yours seems to be still GERD-related to me.


I HOPE so! I swear, I need to get this diagnosis so I can be sure. I can deal with GERD or any other issue other than MND. I just can't get to a doctor until beginning of Oct, but if things worsen over this week or next, I will just go to the urgent care center or something before going back to Germany. Not sure what they can do or how they can help, but I guess I could try.
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 15th, 2014, 11:51 am

For GERD you need to see a gastroenterologist. usually no blood test is available, but sometimes to see if your esophagus is not damaged, FGDI is necessary (unpleasant investigation assuming swallowing an endoscope). But my last gastro did not prescribed it and diagnosed me on the basis of USI, palpation of my belly anbd anamnesis (asking me about symptomes).
Typical symptomes of GERD are painful spasms in the esophagus (not hiccup but that bad feeling like you had swallowed a hedgehog and it stuck in your middle chest), coughing after meals, coughing without fever for a long time. clearing of the throat, husky voice, burning throat, pain in the upper liver region (often taken as liver or gall bladder pain), and only sometimes it may be manifested as classic heartburn.

GERD does not cause fat atrophy, I think it is caused by had adrenaline level in BFS people, becasue almost half of our fellows report that.

If you can not get the Gastro during next month, I may try to advice to use OTC antacides for about a week or two on the need basis - if you will find your voice is huskly, or you have heartburns, or you feel like food is stuck in your throuat causing pain, or you are just wake up in the middle of the night becasue your swallowing is painful and pain irradiates under your shoulder blade - take Maalox, small dose.
and ask for Gastro referral as soon as you would be able becasue GERD needs planned treatment and you must be also checked for Helicobacter Pylori (easy breathing or phecalia test) in order to differentiate between ulcer and GERD.

For bulbar onset therer is no fixed pattern but again believe me, your symptomes are typical for GERD AND gerd IS TYPICAL FOR ANXIOUS PERSONS AND GENERALLY very COMMON ISSUE.

Take antacides (not for long without doctor's prescription) and get a Gastro visit.
You would be OK.
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 15th, 2014, 12:01 pm

Also I would like to note that grip weakness most often is caused by compression syndorme. extrememly common nowadays. So do not worry about that.
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Re: Does bulbar onset always start with slurring?

Postby Xina535 on September 15th, 2014, 1:32 pm

Thanks again. I guess it could be GERD since I have some of those symptoms, but not all (not really the burning and severe painful part).

I will keep all that you suggested and try it and get to an gastroent. when I get back to Germany. I will of course go sooner here somewhere if it's worsening.

As far as the grip....I've had that since April. still there. It is ALWAYS a weak grip (constant), BUT I have noticed that some days are worse than others. That's why I had 2 nerve tests, both ok. So I dont know for sure what this is, but I am going to demand more attention to it when I am back. I am so sick of this run around. Seems like German2 is also having run around, I've had other friends in Germany with the same experience, and I understand some reasons why doctors do not want to prescribe testing in Germany...and people end up paying for test themselves even though they have insurance because its the only way to get the imaging. Very unfortunate.

But you can probably imagine.....weak grip over a long time, fat loss, twitching and then this new voice/throat stuff happening at one time....I'm going totally LOONEY!

I have eaten since, and everything felt fine. Nothing getting stuck or pain. But I get these disturbing one big hiccup things very randomly throughout the day. Havent tried Maalox, just been taking the Omep since it was givén to me for gastritis, so I will try it.....and thanks for the tip (and everything).
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 15th, 2014, 11:26 pm

hiccup is a diaphragm contraction. ask gastro about it too, they know better. I know that actually frequent hiccups may happen due to overal hyperexcitability. and maybe yout diaphragm just twitches as any other structures, Aerophagya (swallowing a lot of air when eating) also could be a reason for hiccups.

Omeprazole is a proton pump inhibitor and should lower your stomach liquid acidity in a long term period. Maalox differs a bit as it is a thick liquid antacide and therefore it covers your esophagus and partially a stomack with the film calming the pain down.

If you use both, do not overuse, as both are intended for lowering pH and may just lower it too much.

since your grip weakness does not evolve since April, I would rather think about compression.
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 16th, 2014, 12:12 am

by the way, I just checked and GERD and gastritis are listed as the casue of hiccup. Hiccup is a result of involuntary contraction of diaphramg caused by excitiation of vagal nerve. This nerve also is responsibe for our guts innervation, its operation also is necessary for acid formation regulation in the stomach so this all is inter-related. We BFS people have a hypersensitive nervous system, both autonomous and central, and that is why we have GIT troubles, paresthesias, pain without inflammation and twitching and anxiety.

so do not worry, it all comes into GERD / gastritis clinical picture. Some people have hiccup, some like me - esophageal spasms (holy crap, so painful...), some have heartburns, etc. but the reason is the same - hyperexcited vagal nerve.
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Re: Does bulbar onset always start with slurring?

Postby Xina535 on September 16th, 2014, 9:53 am

Yuliasir wrote:If you use both, do not overuse, as both are intended for lowering pH and may just lower it too much.


ok I will try some Maalox to see if it reduces hiccups and discomfort

since your grip weakness does not evolve since April, I would rather think about compression.


It has not gotten much worse, but it has gotten worse since it started. At first I noticed just a couple things, now, I notice with everything I pick up, I require more effort in my right hand than my left. I do remember though a couple of periods where the amount of effort waxed and waned, so it was not as bad one day as the other day. Would this fall under compression?
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 16th, 2014, 10:20 am

Perceived weakness waxes and vanes, but if it is caused by nerve damage due to compression (and if compression is not resolved in its root cause, like inflammation of surrounding tissue or physical pinching in the bone channel, etc.), then of course there would be some permanent effect.
but I must tell you that it would be better to talk to neuro before considering more efforts to pick up a thing as a weakness. They usually test weakness on the basis of grip test and pressure test (assessing if you can resist a pressure caused by doctor's hand).
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Re: Does bulbar onset always start with slurring?

Postby Xina535 on September 16th, 2014, 2:46 pm

I have done the whole press against the neuro's hand thing, that's fine. Pushing and pulling is fine, gripping/lifting is not. I have not done a grip test from what I know. What does that look like? Is there a tool they use?

I am having this right chest pain pretty bad lately. It's been around for awhile, but it's back and hurts bad in only certain positions. So right chest pain and right hand weakness, all starting around the same time, including the gastritis diagnosis. Hmm?

Baby steps to getting back to Germany in 2 weeks...
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 17th, 2014, 12:04 am

Nope no tool they just ask you to grip their finger and hold it.

I suppose this it is a very simple test, I mean I suppose doctors can evaluate if the grip is affectyed or not quite easily. TDenver for example reported that his clinical wekaness in the several fingers was detected during such test even before he had recognized it. Only a few weeks later he reported grip problems which were rapidly increasing.

right chest pain may be in fact pain in your stomach as it is located exactly beneath the heart and has natural deviation to the right side coming into the guts. I have such pain right under the ribs and I thought it is a liver/gall bladder but gastro did several exams including USI/palpation and said it is GERD-related.

Unilateral chest pain may be aslo a result of certain nerve entrapment, if I do not mess anything.
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Re: Does bulbar onset always start with slurring?

Postby Xina535 on September 17th, 2014, 3:16 pm

It is so strange to me to think that the neuro would pick up grip strength in a clinical before the person themselves recognize it. I am having difficulty holding my fork up, or when I lift my coke can, it is heavy, heavier than when I grip with my left side. On top of that, it is my right hand that has this "subcutaneous fat loss" where my knuckle is more prominent and veins are sticking out, so these two things together makes me scared!!

Could the fact that there is FAT LOSS contribute to it being weak? I don't think so, it would be muscle/nerve related I would think.

Also, I read that physiotherapist use something called a "dynamometer" to check grip strength, so why don't neurologist use this? I can pull and push my hands with normal force, it's gripping and dexterity (thumb) where my right hand is off.

So for my chest pain, I was told too that chest pain on the right side is coming from my gastritis, but no test was made to confirm the gastritis or the severity of it. Just determined by ruling out heart issues.
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Re: Does bulbar onset always start with slurring?

Postby Yuliasir on September 18th, 2014, 12:40 am

dynamometer has some good usage as a monitoring device, to compare your previos and current results, but when the neuro sees you for the first time he or she could not tell whether your strength is OK by the dynamometer reading... also you can usually exert quite a various effort on the dynamometer so it is not a precise device. Having something 'heavier' is quite a subjective issue also so it is not a good measure as we know how payful could be our mind. As for how they evaluate finger weakness before patient can tell, I believe they know how fingers should respond on pressure or how they shall hold the grip. Al theast the gyu reported that, so...

The only test for gastritis is, as I said you, visual examination by endosope plus test of stomach liquid pH (acidity) as gastritis could be with low or high acidity, and byopsy of the gastric wall :) but usually it is not necessary - those tests. Gastritis is diagnosed by gastroenterologist usually on the basis of anamnesis (specific set of symptoms), palpation of your stomach, maybe ultrasound to see if the wall is inflamed. You may be checked for Helicobacter as some gastritis cases could ve related to bacterial action, this is probably the only non-invasive test related.

so please be sure you have gastric issues explaining well your pains in the chest and voice changes, and as for thumb, of course EMG is the most proper test but looks like without significant deficite of motor function you may have compression issue, rather mild.
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Re: Does bulbar onset always start with slurring?

Postby Xina535 on September 19th, 2014, 3:03 am

Thank you again Yuliasir!

About that dynamometer - did not know about the precision.

I just do not know what you meant here: "Al theast the gyu reported that, so..."

I am going to ask for an EMG of my right hand/arm, an X-ray or something to try to determine pinched nerve or thoracic outlet syndrome and an endoscope (the latter for sure, since this stomach issue seems to get worse even with Omep). I'm also due for a blood profile check anyway.

Baby steps to Germany and the tests. Trying to manage the best I can, including mentally. You were/are such a great support!
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Re: Does bulbar onset always start with slurring?

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