Old 04-15-2018, 05:20 AM #1 (permalink)
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Question Back on here after a long time

Hi All,

My last post on here was almost 2 years ago, about the time i was having my 4th EMG, which came out clear of any serious issues, i wont lie and say everything went back to normal after that, i did have my bouts of weakness, twitching, new symptoms etc etc but since September 2017 ive had some issues with swallowing and coughing, at first it started off as coughing, very intense and a hacking kind of cough, i went to the doctors to ask what was going on but since i have a history with Gerd they played it off and gave me meds, the meds however have hardly done me any good.

Then came the swallowing issues in Sep 2017, i went to a specialist , he did a barium swallow, PH monitor and Esophageal Manometry, the barium results said my swallowing was normal however there was some pressure in my left bronchus which they couldn't explain, the manometry came back relatively normal, only showed slightly lower amptitude in the mid section of the esophagus which he said could be normal or due to stress and couldn't explain it further, the Ph monitor showed acid relfux but not as sever as i would have thought, anyways the doctors gave me some medications which haven't helped much and sent me on my way.

On the bright side my swallowing issues didn't get worse and in fact i didn't notice them that much over the past few months after that until 2 weeks ago when it sudden got pretty bad again, but since november i developed voice issues, basically i was coughing too much and very hard and i felt like i strained my vocal cords, the doctors kept saying its because of GERD and there's not much i can do about it, since Nov i have lost my voice on and off pretty much every couple of weeks, they tried steroids a few times which worked a bit but after it kept reoccurring a few times it doesnt seem to work anymore.

As of today my voice is extremely strained , i have pretty much lost my high pitch voice , during a sentence i literally loose air at certain words, my voice is extremely hoarse , apart from that the cough is severe again and literally causing my stomach muscles and ribs to hurt, my chest hurts and feels weak as well, sometimes i feel like i can't even breathe, apart from that my swallowing is bad again as i feel like the food is getting stuck in my throat and i have to clear my throat often or even cough sometimes when im eating.

However i should mention i have never choked as yet, meaning like a real choke where the food or water went down the wrong way, only coughed sometimes or had to clear my throat, also thats usually after ive swallowed a bite or already had a drink maybe a few seconds later.

I went to my regular Neuro Muscular specialist who checked me out last week, in terms of my body and strength and reflexes, Spasticity, bebinski, my tongue movement, checking for fasciculations he said everything looked alright, they haven't repeated any emg's since late 2016 because they had already done 4 since 2014 and didn't think it was necessary. I do feel like i slur sometimes but ive mentioned it to my doctors and family and no one has noticed it yet.

Ive also been to the various ENT's, one just a couple of days ago, he put a endoscope down my nose to see my throat, he said the motor function looked normal, it moved like it should when i said E... they said it was a bit inflamed which could be caused by the acid reflux and said most likely my voice issues are due to that, they have given me some asthma spray and some new medication to try now and so far its still the same for the past few days.

The only reason im back on here is because im aware that alot of these symptoms are similar to ones found in MND'S such as hoarseness, loosing high pitch voice, chest muscle feelings tired, even my breathing gets tiring sometimes and i have to take breaks when i talk or get tired when i climb up stairs etc..

I understand that there's other factors that could be contributing to it such as my GERD but sadly im still worried about the Neuro Muscular side of things more, i am being truthful and not exaggerating any symptoms, in fact i have even done a lung function test back in Oct around the same time as the barium which was normal as well and even today my peak flow meter reading is over 720ml on each blow.

Could there be something going on ? or should i stop focusing on the Neuro muscular side of things ?

I would really appreciate if anyone who has had a similar situation or has any idea of how these symptoms or things manifest or progress.

Thanks again for your patience and sorry for writing alot as i don't want to waste you time with the back and fourths and would just like some feedback to address my concerns.
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Old 04-15-2018, 11:37 AM #2 (permalink)
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Default Re: Back on here after a long time

in case i never mentioned this before im 34 years old, no history of any ALS in my family , still have twitching issues, especially on my left side ( bicep, elbow, arm, and leg ) but on other areas of my body as well including inside my body such as my chest, stomach, throat etc, spasms as well pretty much everywhere even inside my chest or throat, feel like my left hand is slower than my right, fingers don't move as fast etc... and in terms of my cough, i feel like my cough isn't strong enough sometimes or i feel like i cant initiate a good cough which turns into a barrage of weird coughs some sounding like barks or gags, but then at times its fine as well and i can cough non stop without issues.
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Old 04-15-2018, 12:49 PM #3 (permalink)
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Default Re: Back on here after a long time

As to your very sensible question as to whether you should stop focusing on all things neuromuscular, the answer is an unqualified yes.

In re the steroids, if they don't work, I wouldn't use them as they have other side effects. If the symptoms wake you, you might discuss screening for apnea with a pulmonologist. I presume you have had lung function testing.

Try eating slower, eliminating foods that bother you, drinking warm liquids before and after eating, and not multitasking while you eat. A speech therapist can give you more tips after watching you swallow. Consider a brief meditation just to give eating more of a context.

I understand the temptation to have a "grand disease theory" but sometimes a little self-care and pacing yourself does wonders. Act as if there is nothing really wrong, which is, after all, what all the evidence over several years suggests. You did it for a while, so you can do it again. Spend your time chasing butterflies and your own best self-regard, instead of specialists and drugs.

Best,
Laurie

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Old 04-15-2018, 04:34 PM #4 (permalink)
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Default Re: Back on here after a long time

I have pretty bad GERD and so does my niece. There is a book called "Dropping Acid" and it's a lifestyle plan to reduce or even eliminate GERD. It takes some willpower but it might help with the hoarseness and the damage the acid is probably doing to your esophagus.

Are you on a proton pump inhibitor? Severe cases of GERD might require one. I'm sure you have already been told to eliminate chocolate, soft drinks, onions, tomatoes, and foods with low ph. Also, nothing to eat or drink except water for four hours before going to bed.

Nothing in your post sounds like any type of motor neuron disease.
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Old 04-15-2018, 10:39 PM #5 (permalink)
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Default Re: Back on here after a long time

Robb,

Your post has 14 paragraphs, 79 lines and nearly each paragraph is an entire sentence broken with numerous commas.

Here's the one paragraph/sentence you wrote yourself that should close your concerns...

"I went to my regular Neuro Muscular specialist who checked me out last week, in terms of my body and strength and reflexes, Spasticity, bebinski, my tongue movement, checking for fasciculations he said everything looked alright, they haven't repeated any emg's since late 2016 because they had already done 4 since 2014 and didn't think it was necessary."

Key words...

"they haven't repeated any emg's since late 2016 because they had already done 4 since 2014 and didn't think it was necessary."

As far as this Forum goes... you're good to go. Get that GERD taken care of.
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Old 04-15-2018, 11:22 PM #6 (permalink)
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Default Re: Back on here after a long time

Thanks for your replies, it really mean a lot that you took out time to address my concerns, so basically it all comes down to GERD then, in your opinion all my symptoms could be explained by GERD ?

Honestly speaking im tired of going to the doctors, ive been to too many and its not helping in anyway as they cant pin point the problem and also there's no evidence of anything serious at the same time, but every time it comes down to the same story, was some test done to early, or there was a slight issue but not enough to cause concern etc etc, if we look at it like that it would just be endless test every 4 months.

I know if i go back to my old Neuro he might push me for another EMG since he's an EMG expert but after 4 years and 4 EMG's, 3 MRI's, Endless blood test, Barium Swallow studies, endoscopies, Lunch function testing etc etc would it even be wise to go that direction again ? I mean i want to really tell myself that if i did have a MND wouldn't it clearly show by now ? extreme and obvious limb weakness, obvious slurring, obvious breathing and swallowing difficulties such as choking etc etc ?

its an endless cycle, im just tired of this cough and feeling of being breathless sometimes, i cough enough to disturb my wife and baby which is the worst part especially at night, apart from that seems like my anxiety or some issue has driven me to hallucinating as well, sometimes right before going to bed as i close my eyes i start hallucinating and things start playing in my mind, like a story or movie and this is before i even fall asleep and usually i jerk myself up or feel like i cant breath or a sinking kind of feeling.

it happened last night as well and i had convinced myself i had chest weakness due to which i couldn't breathe well and my body couldn't fall asleep, even while walking or talking its challenging at times, logically i would say maybe ive coughed so hard everyday that my chest muscles are sore and make me feel that way. As for the Sleep apnea test, they have wanted to do it for me for the past 2 years but ive been told that my left septum is deviated and the test results will not be clear due to that, however i can guarantee i do have sleep apnea to some extent as i am over weight, i have lost a bit of weight since last sept since i didnt eat much due to my swallowing issues but then i started eating more regularly again my weight stayed the same, but now again i haven't been eating much for the past week and feel like it will go down again.

Anyways Thanks again everyone for all your replies, i know im probably in the wrong place and disturbing you nice folks but i really didn't know who else to turn to at the moment and thought maybe if there was anything that sounded out of the ordinary, you would direct me to the right direction to get a proper diagnoses.

Again Thanks and Prayers to everyone on here.
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Old 04-16-2018, 12:04 AM #7 (permalink)
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Default Re: Back on here after a long time

Robb, wish you the best that your doctors find a curable approach to resolve your health issues. But... by now, after all involved in your medical journey... ALS is not in the picture. You've written in so many words you mistrust your doctors and test results. Trust is acceptance.

Anyway, many years ago, 1968, this song brings back several memories...

"One Night in Bangkok" by Murray Head. I couldn't imagine what it's like today.

Yes, "One night in Bangkok can make a hard man humble."

Best wishes...

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Old 04-16-2018, 01:09 AM #8 (permalink)
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Default Re: Back on here after a long time

If you have sleep apnea, regardless of nasal issues, it will show up on a proper sleep study. Often, these can even be done at home. If you have apnea, a PAP could make you feel a lot better.

As to more testing for MND, asked and answered. You have reported no reason to go back to a neuro at all.
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Old 04-16-2018, 10:39 PM #9 (permalink)
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Default Re: Back on here after a long time

Thanks alot everyone, alot of valuable information and good advice, Clearwater Al Bangkok is still as crazy as it was back in the day however i try to stay clear of all that madness

I will honestly try my best to move on from this, even last night i had a very rough night as everytime i would try to close my eyes to sleep i would get a feeling that my heart is sinking or that i can't breathe or my cough reflex would activate and kind of make me gag, the hard to explain but a feeling of being frightened would literally come over me everytime would try to fall asleep, the night before was also similar but with hallucinations, like i would literally have a movie start playing as soon as i closed my eyes even before falling asleep, i even woke up feeling sleepy and with heavy head and a feeling of weakness especially on my left side ( not real weakness as i checked my strength and it was normal and im writing this using my left hand as well so i know its functioning the way it should and last but not least some balance issues as i feel like im falling to my right side, again a feeling rather than an obvious symtom ), i know if it was the old me i would be jumping to a million conclusions possibly that i have a brain tumor or that my chest muscles are weak and i wake up because i can't breathe or that my throat is not functioning correctly and makes me choke or gag when im passing out etc etc..

However logically since in the past 2 years a MRI, MRA ( late 2016), barium swallow (late 2017), blood test, MG blood test ( Late 2017) , Chest X'rays, lung function test ( Late 2017) etc etc etc have been done i should probably tell myself its what it most likely is which is anxiety, acid reflux ( GERD ), throat irritation with mucus due to the acid reflux, i have probably tired myself out with all the coughing as well making my chest and stomach muscles sore and tired and it could also be part of sleep apnea but that needs to be proved first through a sleep study, one thing i have noticed in the past few days is that i need to clear my throat every time i drink something, also with eating sometimes, no choking just throat clearing or a slight cough.

Anyways i will definitely look into the sleep Apnea test as recommended as im pretty sure i do have it and have had it for the past few years, i used to snore alot but my wife mentioned its not as much anymore however im sure it can still be there even if im not snoring especially even after loosing a bit of weight i am still over weight.

Thanks again everyone !! you guys are the best

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Old Today, 01:47 AM #10 (permalink)
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Default Re: Back on here after a long time

Hey All,

Sorry for prolonging this thread however got one last question that i forgot to ask earlier.

I noticed that when sometimes i talk too much or long i start to get a lightheaded and sometimes feel a bit numb in my fingers, a little breathless as well, also my cough might be getting aggravated when i talk to much, i have also mentioned that i i was getting some hallucinations before bedtime, feeling like im blur at times, can't remember things properly, headaches, even have trouble remembering some old people i know names at first.

I don't want to get ahead of myself and start self diagnosing myself again or turn to Dr. Google, but from what i understand all this could be pretty much anxiety or other small issues but at the same time could be serious issues as well, even in terms of ALS respiratory onset and weak chest muscles might cause a lack of oxygen to reach the brain which might cause symptoms like that, also my heart beat is always pretty fast, i assumed its due to my anxiety as well but when im relaxed it slows down to normal levels.

However i don't want to go that direction or run to another doctor, as i mentioned i had a Chest X-ray last month which was completely normal ( from my understanding a weak chest wall would show up on that ), also ive done a lung function test around 5-6 months ago which was completely normal, in fact better than average, and my peak flow meter is still showing i have very good breathing and can exhale better than average people ( the meter goes up to 800ml, usually my blows are around 720-760 on an average everyday.

That being said with all the other history with the EMG'S, test's that ive mentioned and 4 year mark and all that, any idea if this could be a cause of concern ?

i mentioned it to my neuro in my last appointment as it happened while i was sitting there and was talking alot, he didn't pay attention to it and say it could be anxiety, but lately its been happening more often, a long with coordination problems like i feel im drifting to one side but usually when i walk or analyze myself its not obvious, another thing i also noticed was my Gait where i felt like my left hand wasn't swinging the same way as my right also my left hand twitches more lately but that comes and goes especially on my bicep and around my pinky ( ive always mentioned in the past that the left hand has always felt a bit slower or gets tired more easily but its been like that for a long time, my last emg was done on that hand and apart from an ulnear nerve issue nothing was picked up ) also my right foot feels clumsy when i walk sometimes, again its more of a feeling when i ask my wife to have a look she said it looked pretty normal.

Anyways if anyone has any feedback or idea of what might be going on, please let me know.

Thanks alot and sorry for keeping this thread going, hopefully this will be the last time i bother you all
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Old Today, 01:51 AM #11 (permalink)
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Default Re: Back on here after a long time

Once again, sleep apnea can cause everything you've described. If you're not getting enough oxygen, scary things can happen.

Asked and answered -- get a sleep study. Typing is not a substitute.
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Old Today, 01:58 AM #12 (permalink)
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Default Re: Back on here after a long time

Thanks for your quick reply lgelb, duly noted regarding the sleep apnea and i already made an appointment to go see the lung specialist to order one, so basically in your opinion this has nothing to do with a MND or actual weakness, but could be due to that fact that im not getting enough sleep or proper sleep and its affecting my body in weird ways ? such as the symptoms that i mentioned ?

Thanks again
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Old Today, 02:09 AM #13 (permalink)
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Default Re: Back on here after a long time

Robb, please re-read Laurie's message. It clearly states the answer to your question.
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Old Today, 05:26 AM #14 (permalink)
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Default Re: Back on here after a long time

My apologies guys, didn't mean to sound pushy or rude, completely understand Laurie's point, as she mentioned before nothing ive said so far points to me feeling the need to visit a neuro again especially in regards to neuromuscular issues and a sleep apnea test would probably be the most logical thing to do.

The only reason i asked again was because sometimes MND patients are actually helped diagnosed by sleep apnea test since it shows that their respiratory system is not functioning the way it should and causing them lack of sleep, other symptoms etc.. i just don't want to head in that direction again so just wanted to clarify its not related to that kind of issue.

As i mentioned i have other issues as well like my swallowing, food does get stuck in my throat sometimes and i need to drink something or take another bite to take it down, even with pills i noticed they get stuck easily, i have to clear my throat alot and cough a bit as well, but haven't ever choked as yet, i did the barium swallow 6 months ago, the exact words they used were

" Normal Swallowing function noted under fluroscopic observation, Persistent pressure effect from mid esophagus from left main bronchus but causes no delayed passage or hold up effect of barrium passage.

Decreased motility of lower esophagus is seen especially with increased abdominal pressure.

No persistent filling defect, narrowing segment or abnormal mucosa of esophagus is noted.

no Abnormality of EG junction is seen.

No Hiatal hernia.

The doctor said its not related to any neuro muscular issue at the time due to the fact that the neuro's have been checking me for 4 years.

Basically if i go back to the doctors here and mention that im having swallowing issues like the ones i mentioned and then that im getting breathless and all the symptoms that i mentioned they will make me go through all that again, given the information should i honestly venture that way ? ive wasted so much time and money and its affected my life in every sense, if i go down that road again there's only two ways to look at it, more money, time etc wasted and still no diagnoses and most likely will have an affect on my personal relationships as well, or of course the need to actually do it since there's definitely something going on and it needs to be diagnosed.

Im pretty lost.

Anyways sorry again guys, this will be my last post, if any of you have any advice kindly let me know.
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