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Luke

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Hello all,

I've posted here once before about my symptoms and the background of why I came to this board, but basically I've got a number of issues going on that my neurologist is working to diagnose. After my pulminary exam, I was told that my diaphram muscle strength is "below normal, but not diagnostic," and I've been referred to another more involved pulm. exam where they'll do the same test again and then repeat it while I'm lying on my back. Also, after I developed problems swallowing, it was found that I have weakness at the base of my tongue (that part of my tongue is paralyzed), causing pooling and coating in my throat, a little bit of nasal regurgitation, but no aspiration or choking at this time. Finally, I've got increasing weakness especially in my head / neck muscles (clinical) and easy fatigue / heavinesss / loss of mass in legs and arms, preventing me from walking long distances or do much eavy lifting. Long story short, believe it or not, the most distressing thing for me right now is the swallowing. My question: does anyone here experience a problem where food and beverages remain in the back of the throat and no matter how hard you swallow, how much mouthwash you swish around or how thoroughly you brush your teeth, the substance remains back there and becomes very nasty after a couple hours? I know it's not life-threatening but very annoying and I'm self-conscious that it must be causing some bad breath. Any tips for working through this swallowing symptom? I suppose the other big problem right now is I can't sleep. I wake up multiple times per night with labored breathing especially when on my back, and I never seem to reach a deep level of sleep. I often have a headache in the morning and just feel completely exhausted. I got a wedge pillow and try to prop myself up, and this has brought minor releif, but I still can't sleep through the night. Anyhow, this is all from someone not yet diagnosed with an MND or ALS, but my neuro has said we're looking at "possible muscle disease" at this point. In the meantime, I'm trying to live a normal life but these symptoms are frustrating and seem to be getting worse by the week, even if slightly. Thanks for any help.
 
You need to understand, Luke, that the PALS here are working under disability--it's hard for them to go find your other posts. A brief run-down of what's been done and/or ruled out helps.

For instance the following:

EMG/NCV
Sleep Study
Swallowing study?
Are there clinical UMN signs? (Where the doctor finds Babinski, hyperreflexia, increased muscle tone? Clonus?

If so, what were the results?

If you have Bulbar issues diagnosed by the doctor--he needs to answer your questions. Choking is a real concern--and aspiration--with ALS.

Other things can cause those issues, though. Things 'remaining' in your mouth at the back CAN be life threatening if they go down the trachea instead of the esophagus.
 
You need to understand, Luke, that the PALS here are working under disability--it's hard for them to go find your other posts. A brief run-down of what's been done and/or ruled out helps.

For instance the following:

EMG/NCV
Sleep Study
Swallowing study?
Are there clinical UMN signs? (Where the doctor finds Babinski, hyperreflexia, increased muscle tone? Clonus?

If so, what were the results?

If you have Bulbar issues diagnosed by the doctor--he needs to answer your questions. Choking is a real concern--and aspiration--with ALS.

Other things can cause those issues, though. Things 'remaining' in your mouth at the back CAN be life threatening if they go down the trachea instead of the esophagus.

Hi, I'm sorry about that. My first post was so long that I was extra cautious about keeping this one brief, so thank you for letting me know what's easiest for the folks on the board.

Here's more detail:

Sympto/ms:
Difficulty swallowing (pooling, coating, nasal regurgitation) - became noticeable approx. 2 months ago
Frequent wakings at night / lack of deep sleep / headaches and exhaustion upon morning waking - Have had morning headaches about 3 times per week for the last couple of years and ignored them. More pronounced inability to sleep properly evolved over last 6 to 8 weeks)
Recurring bouts of shortness of breath - I noticed (and continued to ignore) this problem for about 2 years now but it's really asserting itself in my daily life now
Difficulty getting adequate breaths when resting, especially on my back or while lying on my left side - Stopped sleeping on my back about 2 years ago due to waking up gasping periodically in the night (again, something I ignored until I couldn't anymore)
Reduced facial elasticity, especially in lips, front of neck and underneath chin (been curious about this strange symptom for a couple years but figured it was just me entering my 30's)
Fatigue (mid-day and evening are worst) - Have had this for a few years, always attributed it to just not getting great rest at night. Worsened in past few months.

Unexplained weight loss - 20 lbs. since October 2011
Fatigue in legs when walking stairs, trying to run, or walking any long distance. SImilar sensation in arms when playing guitar, brushing teeth or otherwise exerting muscle activity. - became noticeable about 2 months ago
Visible thinning of muscles and loss of mass - gradually observed over past couple months. not clinically validated at this point
Clinical weakness at base of tongue per berrium swallow study - Noted approx 6 weeks ago
Minor clinical weakness in neck muscles per neurologist physical exam - noted approx 4 weeks ago


Tests performed so far:
Bloodwork: Thyroid / antibodies / MG / GB / cell counts / viruses / liver function / CK (possibly others) - - performed during past 2 months, all negative
Neurological physical exam #1 - No signs of clinical weakness - approx 2 months ago
Berrium swallow study - clinical weakness at base of tongue / that part of tongue not moving during swallowing - approx 6 weeks ago
Neuro physical exam #2 - Slight weakness in neck muscles - approx 1 month ago
EMG / NCS - All results normal (a great sign, I hear) - around time of neuro exam #2
Lung function test - Lower than expected results in diaphgram strength (I don't have the exact values) - approx 2 weeks ago - Neuro commented on chart "possibly due to muscle disease but not significant enough to be diagnostic." Referred for follow-up pulm. test in sitting and lying on back positions.

What's next:
Genetics testing - 4/16 - test for mitochondiral diseases that can co-exist with the form of blindness I have (retinitis pigmentosa, for those interested). Wondering if a Kennedy's test would be in order too given I don't think I have many UMN signs at this point No known family history of any of my neurological symptoms though.
ENT appt. w/ videoscopy - 4/30
Expanded pulm. exam - 5/9
Follow-up appt w/ neuro - 5/24

OK, another lengthy but hopefully better-organized post, this time. Yes, upon early symptoms of weakness and swallowing issues I hit up Google, a common mistake, I know. Yes, that's what led me down the road of wondering about ALS / MND. I'm not generally a hypochondriac but I've felt so unlike myself physically and these symptoms have alarmed me so greatly that I took to doing some of my own research while awaiting the first neuro appt. You search for those symptoms and you know what "big name" diseases come up first.

Thanks,
Luke
 
My question: does anyone here experience a problem where food and beverages remain in the back of the throat and no matter how hard you swallow, how much mouthwash you swish around or how thoroughly you brush your teeth, the substance remains back there and becomes very nasty after a couple hours? I know it's not life-threatening but very annoying and I'm self-conscious that it must be causing some bad breath. Any tips for working through this swallowing symptom?

Yes Luke. I agree it's very annoying and sounds quite similar to what I experience. I have found that certain foods particularly get stuck, they seem to be items of a large capsule size. If I select, cut or blend food smaller than that I have way less trouble. Also rather than trying to wash a stuck bit down with water (which doesn't seem to move it at all) I have better luck clearing with a think pudding or custard constancy food. That seems to grab the stuck bit and drag it on. Then follow up with water to clear all the custard/whatever down.
I also have found that if I regularly use just plain saline nose spray 2 to 3 times daily that seems to keep back nasal passages much moister and I have less sticking. With me food seems to stick high up, almost up my nose, feels like it anyway.
I have a hard time getting and keeping my mouth and teeth clean. What you are doing sounds good but I have found that my tongue is often the worse offender. I use an electric tooth brush and clean it as best I can. That does not do the job however entirely and I have found that if I use a "fruit spoon". This is a spoon that has a more pointed end and has very small serrations on the end half, used to eat fruit, duh! If I use it as a scraper of my tongue it helps lots. I turn the spoon over and scrape my tongue HARD with it as far back as I can manage. I have very little control of my tongue and it's a job to get it scrapped like this but worth the effort. Not only does my mouth feel better but my breath is better and I can taste food better. When was the last time you went to the dentist? My dentist literately stood on her head cleaning my teeth with me in a upright sitting position and the assistant with the suction wand making sure not a drop of liquid went down. They both had bad backs for a week, I feel sure but it really was just wonderful to get a professional clean.

I suppose the other big problem right now is I can't sleep. I wake up multiple times per night with labored breathing especially when on my back, and I never seem to reach a deep level of sleep. I often have a headache in the morning and just feel completely exhausted. I got a wedge pillow and try to prop myself up, and this has brought minor releif, but I still can't sleep through the night.

No matter what else is going on, not getting good sleep makes even small problems seem worse. Again what you describe sounds similar but I am not getting headaches. Have you told your doctors about this? You really should. About a month ago I found that I could not cope with just a wedge (memory foam) and any amount or combination of pillows. I tried what seemed like any and all combinations with no success. I got a hospital bed and am sleeping better than I have in 6 months. For me, for now, it has made all the difference in the world. I was not sleeping for more than 1 hour at a stretch ever in bed with wedge or in a lazyboy type chair and now have two or three good 4 hour sleeps with just a semi concious reposition between every night . It's a rather big step and I don't know if you even have that option but that is the only thing that made any real difference to me from the point at which you seem to describe yourself at.

Best of luck with finding ways to cope. I hope you find answers to your major health questions soon.
 
Yes Luke. I agree it's very annoying and sounds quite similar to what I experience. I have found that certain foods particularly get stuck, they seem to be items of a large capsule size. If I select, cut or blend food smaller than that I have way less trouble. Also rather than trying to wash a stuck bit down with water (which doesn't seem to move it at all) I have better luck clearing with a think pudding or custard constancy food. That seems to grab the stuck bit and drag it on. Then follow up with water to clear all the custard/whatever down.
I also have found that if I regularly use just plain saline nose spray 2 to 3 times daily that seems to keep back nasal passages much moister and I have less sticking. With me food seems to stick high up, almost up my nose, feels like it anyway.
I have a hard time getting and keeping my mouth and teeth clean. What you are doing sounds good but I have found that my tongue is often the worse offender. I use an electric tooth brush and clean it as best I can. That does not do the job however entirely and I have found that if I use a "fruit spoon". This is a spoon that has a more pointed end and has very small serrations on the end half, used to eat fruit, duh! If I use it as a scraper of my tongue it helps lots. I turn the spoon over and scrape my tongue HARD with it as far back as I can manage. I have very little control of my tongue and it's a job to get it scrapped like this but worth the effort. Not only does my mouth feel better but my breath is better and I can taste food better. When was the last time you went to the dentist? My dentist literately stood on her head cleaning my teeth with me in a upright sitting position and the assistant with the suction wand making sure not a drop of liquid went down. They both had bad backs for a week, I feel sure but it really was just wonderful to get a professional clean.



No matter what else is going on, not getting good sleep makes even small problems seem worse. Again what you describe sounds similar but I am not getting headaches. Have you told your doctors about this? You really should. About a month ago I found that I could not cope with just a wedge (memory foam) and any amount or combination of pillows. I tried what seemed like any and all combinations with no success. I got a hospital bed and am sleeping better than I have in 6 months. For me, for now, it has made all the difference in the world. I was not sleeping for more than 1 hour at a stretch ever in bed with wedge or in a lazyboy type chair and now have two or three good 4 hour sleeps with just a semi concious reposition between every night . It's a rather big step and I don't know if you even have that option but that is the only thing that made any real difference to me from the point at which you seem to describe yourself at.

Best of luck with finding ways to cope. I hope you find answers to your major health questions soon.

Thanks for the helpful and thoughtful response. Regardless of the cause of my issues, the suggestions you've made are great and I'll definitely give them a shot. By the way, in response to a previous person's reply to this thread, I replied with a detailed account of my symptoms and the testing / diagnostic steps we've taken so far. That was earlier today and I don't yet see that reply. It says it is awaiting approval, so hopefully that shows up soon, as it will give the thread readers more information about my experience. Thanks again.
 
Never mind - that "missing" reply of mine showed up. :)
 
Luke,
You were right, it wasn't there before. The second part of your symptoms concern me. I gather you have never had a sleep study done. I didn't see one mentioned in your lists. Since you are experiencing morning headaches. Afternoon or midday exhaustion and shortness of breath, its an easy nights sleep in a sleep lab. Also, not to scare you just covering all my bases, have you ever had an EKG done or worn a holter monitor? You mentioned your neurologist mentioned muscle disease, instead of go og li ng, have you looked at the M D A we bs ite? this wonderful organi zation covers 40 different types of dis eases. They also have a detailed list with symptoms. I would start there first. And it really isn't that long before your next appointment. (I would really have your heart checked out, I reread your post about shortness of breath when lying on your left side.)

Good Luck and Keep us Informed,
 
Luke,
You were right, it wasn't there before. The second part of your symptoms concern me. I gather you have never had a sleep study done. I didn't see one mentioned in your lists. Since you are experiencing morning headaches. Afternoon or midday exhaustion and shortness of breath, its an easy nights sleep in a sleep lab. Also, not to scare you just covering all my bases, have you ever had an EKG done or worn a holter monitor? You mentioned your neurologist mentioned muscle disease, instead of go og li ng, have you looked at the M D A we bs ite? this wonderful organi zation covers 40 different types of dis eases. They also have a detailed list with symptoms. I would start there first. And it really isn't that long before your next appointment. (I would really have your heart checked out, I reread your post about shortness of breath when lying on your left side.)

Good Luck and Keep us Informed,


Thanks for the reply. I forgot to include in my post that I did have an EKG and all was normal there. I haven't had the other test you mentioned, so I'll inquire about that and I'll take a look at the website as well. I have to say, as someone who hasn't gotten any formal diagnosis yet, I sort of feel like a fraud coming here and receiving such kind support, in many cases from people who are probably experiencing far more significant challenges than I. That said, I extend a humble and heartfelt thanks to everyone who has replied. Great community here.
 
Anyone with pulmonary issues should have a sleep study done. Added to that your swallowing issues--and the combined issues suggest a sleep study would be a very good idea.

And, there are all kinds of cardiac issues that won't show up on a 20 second EKG. A Holter Monitor study wouldn't sound like a bad idea, either.

morning headaches, and tiredness, can be a sign of severe sleep apnea. I have weakness in my paraspinal muscles -- and I have major sleep apnea. If you have insurance, see if they can order one.

I'm assuming the EMG was of your arms and legs? Or did they include the paraspinal and bulbar regions as well?

Hurry up and wait is the theme here, I'm afraid.
 
Anyone with pulmonary issues should have a sleep study done. Added to that your swallowing issues--and the combined issues suggest a sleep study would be a very good idea.

And, there are all kinds of cardiac issues that won't show up on a 20 second EKG. A Holter Monitor study wouldn't sound like a bad idea, either.

morning headaches, and tiredness, can be a sign of severe sleep apnea. I have weakness in my paraspinal muscles -- and I have major sleep apnea. If you have insurance, see if they can order one.

I'm assuming the EMG was of your arms and legs? Or did they include the paraspinal and bulbar regions as well?

Hurry up and wait is the theme here, I'm afraid.

The EMG was only done on my left arm and leg. It seemed really brief and arbitrary, but I'm not the expert so I trust he knew what he was looking for. It showed no abnormal findings.
 
Luke,

As you noticed I am not always an inconsiderate person as was made out to be on another thread. You came, you posted and you're genuine. You listen intently, and we appreciate that.

As I said before and Notme backed me up, I/We feel that you really should have your heart checked out. A holter monitor is an mobile EKG. They connect electrodes to your chest and give you a little pouch that has the machine in it. Anytime you feel something you can sometimes press a button or record the time. They have short times and extended ones. The downfall is you cannot bathe while wearing it. My 10 year old daughter had to have this done and she was able to do it at school. The nurse was a great help.

Also, as we mentioned the sleep study is a wonderful diagnostic tool. I don't remember when your next appointment is, but Monday morning I would take a few minutes and make an appointment with your GP or PCP. Please keep us informed of your doctors visits. And please keep the level head that you have. Good Luck,
 
Luke,

As you noticed I am not always an inconsiderate person as was made out to be on another thread. You came, you posted and you're genuine. You listen intently, and we appreciate that.

As I said before and Notme backed me up, I/We feel that you really should have your heart checked out. A holter monitor is an mobile EKG. They connect electrodes to your chest and give you a little pouch that has the machine in it. Anytime you feel something you can sometimes press a button or record the time. They have short times and extended ones. The downfall is you cannot bathe while wearing it. My 10 year old daughter had to have this done and she was able to do it at school. The nurse was a great help.

Also, as we mentioned the sleep study is a wonderful diagnostic tool. I don't remember when your next appointment is, but Monday morning I would take a few minutes and make an appointment with your GP or PCP. Please keep us informed of your doctors visits. And please keep the level head that you have. Good Luck,


Thanks for the kind words and the insight. I'll discuss that suggestion with my primary doctor. As a brief update, swallowing has become more difficult since the symptom first appeared. I hadn't had any concerns of choking or aspiration, but I now find that if I am not careful, especially with water, it goes the wrong way and I cough. I'm also having more trouble with my right leg than my left, at this point. I don't know how to describe it, but the ankle feels weak. It's almost like I find myself shuffling with that foot, though I don't mean to. I'll keep you posted on my upcoming appointments. Thanks again.
 
Luke, try tucking your chin when you swallow thin liquids. I'm sure you can find some other tips online at one of the major medical sites regarding positioning that may help you temporarily.
Good luck with your appointments.
 
I was fortunate to get my ENT appointment bumped up to today, so I knocked it out along with the genetics appointment. The ENT tech said everything looked normal as far as throat, vocal chords, tongue, etc. The geneticist said there was no chance my neurological symptoms were related to my eye condition. So, I guess there are two more things ruled out. I'll circle back with my neurologist and I guess we just keep on going until we figure this thing out.

Thank goodness I have my wonderful girlfriend in my life, as she's been amazingly supportive and has this absolute faith and conviction that she knows I'll be OK and things will work out. It's inspiring and comforting, and it's helping me in turn have that same faith and trust that things will be OK.


Good night, all

Luke
 
Luke,

When is your appointment with your neuro? And did you make one with your PCP yet? That's good news on the ENT. I'm not sure what to think of the geneticist. I remember seeing a form of MD that was occular something. Maybe that's what he was thinking.

Keep us posted,
 
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