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Birmimat

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Hi everyone
I would like to get some people perspectives on some of the challenges I’ve been having, but before I share my experiences, let me first start by saying I am so amazed and encouraged by all of the support , strength and bravery demonstrated by all members of this forum. Up until several months ago, I never really knew what ALS was, let alone how horrible and impactful this disease truly is. I work in the biotechnology industry developing drugs and therapies for various cancers and get to observe first hand the challenges of terminal diseases and the perseverance of patients to fight against all odds, but the more I read through this forum and see the strength of individuals and their caregivers to fight against such a relentless disease, the more I see how PALS are truly inspirational individuals. I pray for and wish nothing but the best for everyone on here, and hope that someone, some day soon, can discover a treatment or cure to such an horrific disease.

So the reason for posting on this forum is to try and get some perspectives regarding some of the challenges I’ve been having over the last year or so, especially over the last several months. Like many people on here probably know, it seems like it takes a year and a day to get an appointment with a neurologist, and then as you proceed down the path of tests, it’s a slow on going process to get a few more piece to the puzzle. As I continue down this journey to a hopefully identifying what is causing my issues, I wanted to reach out to people on here to see if they might have some insight into my issues and could share if they seem in alignment with ALS or some other neurological condition. I’ve read a lot of various posts and stickies, and it seems like there are some similarities of my symptoms to bulbar onset, but at the same time, it could be, and hopefully is something else.

About me and my symptoms and issues:
I’m 35 year old Male, no history of any health issues, a beautiful wife and 3 year old son.
About a year ago, I started noticing that I was having difficulties swallowing. It felt like the mechanics of my swallowing were just off. I noticed that depending on various positions my head, neck, or body was in, it was more difficult to swallow than others (if lying down, or head turned a certain way). Swallowing started to become a very manual thing that I had to think about in order to swallow things correctly. I would have to concentrate, and position my mouth in certain ways or swallow in different ways in order to get liquids and saliva down. I also started to notice that there was a clunking / clicking sound from time to time in my adams apple area when swallowing. I still have this issue today, but it is not always present. Also about a year ago, I began to notice that particularly starchy foods were started to get stuck in my esophagus. When this would happen, I’d start to salivate like crazy and try and force the food down, until it finally went down. Also, everytime I swallow, I have crackling in my ears, and my eustation tubes seem like they are always clogged.

Around this time time, I started to notice that I had to strain more than usual to talk and at the same volume I used to. After a long day at work, I noticed that I was sometimes hoarse and felt like all of the muscles in my jaw and particularly the muscles under my tongue were so fatigued and tired. I basically didn’t feel like talking, and if I did, it was very soft and quiet. I had an ENT look in nose, voice box, throat area and said everything looked normal. I eventually had a swallowing study done and the Dr. observed that food was getting stuck in my esophagus and then syphoning through. They diagnosed it as chotski’s ring and were not concerned. Two weeks ago I had an endoscopy done and they confirmed that there is no ring or blockage, everything is normal looking and they are thinking that food is sticking because there is not any coordination in my esophagus muscles or not enough strength to push the food / liquid down (additional tests to come).

Over the last several months, symptoms have progressively gotten worse. I’ve noticed that the left side of my face (jaw / ear area down to my chin and lip area feel like they are somewhat paralyzed…fatigued and don’t have the ability to move those muscles as well. My range of motion with muscles in my face (smiling or expressions are not the same on both side…you can see slight difference) is not very good. When smiling or making facial expressions, muscles in cheeks and jaw and neck are very shaky like they are very fatigued when trying to hold that position. The muscles however are not twitchy when at rest. I have noticed that I have slight discomfort in and around my left ear / jaw area (feel like I’ve blown up about 1000 balloons). I haven’t really noticed the same symptoms on the other side of the face, but over the last week or so, I feel like I’ve noticed some additional fatigue on the right side as well. When I open my jaw to yawn, the muscles feel fatigued or rigid and tight, especially in the soft pallet / back of the throat area.

During the last several months, drinking thin liquids has become noticeably different. I now have to really focus on swallowing and position my mouth in a certain way in order to swallow without choking on it. Taking any large viatmins is now difficult, and it sometimes does not go down. I’ve also been experiencing difficulty with talking at times. For the most part, I can say and pronounce most words, but I frequently will slur words together and not be able to pronounce them correctly. I haven’t had many people notice about my slurring…maybe one or two people have commented on a combined word and they ask me what they heck did I just say. I noticed that when I talk, my mouth isn’t really moving a whole lot, because I think the muscles are so fatigued. I’ve also noticed that I can’t make certain sounds / or pitches anymore with my voice…especially the higher pitch tones.

When I blow my nose, there isn’t a lot of force anymore. Its kinda difficult to get enough force to really clear my nose or passage way. I can’t make the snort like a pig sound anymore… (not that I was always making this noise to begin with) if I do its like my soft pallet gets caught or something. I’ve noticed that my soft pallet gets in the way sometimes when breathing in or out through my nose.

What else… I have a lack of balance and coordination. I’ve noticed that I kinda walk into thing and I’m kinda tippy where I have to catch my balance from time to time just walking around. I haven’t fallen over or anything like that but have noticed that my balance is not really that great.

Within the last month, I’ve had difficulty sleeping and have developed jittery shakes that don’t seem to go away. Throughout most of the day now, I feel like my body has had about 30 cups of coffee and my arms, chest area, hands, feel jittery and weak like after I just lifted weights all day long. I can see the shaking in my arms and hands. If I really concentrate, I can get them to almost stop, but its still there. At first I thought that it was a side effect of Prozac that I just started taking (not really an anxious / depressed person before, but as all of these symptoms started to progress and seemingly come out of no where, doctor gave me Prozac) because these jittery feelings started when I started the prozac. I’ve stopped taking Prozac for about 3 weeks now and I still have them. I’ve seen the neurologist but he didn’t really have an idea as to what it could be and said we’d be doing a bunch of tests to rule some things out). During his office visit basically asked how long I’ve been feeling this way, did a bunch of reflex tests, had me squeeze his fingers while I looked up and counted to 50. He had me walk and said I looked normal even though it feels like my gait is a little off. He had an MRI done, which came back clear so now we’re at the point of additional tests – EMG and others. Unfortunately, its another month before that appointment so the waiting game continues.

I’ve heard a lot of people say that their tongue loses a lot of strength ability to move. So far, I haven’t really experienced this. I have no problem sticking my tongue out , moving it quickly back and forth, touching all of my teeth with it or any other agility related movements. I don’t notice it shaking or anything like that either. Mainly, my fatigue is in the muscles under my tongue, the back of my throat, and neck area.

Lets see, that about it. I know that I wrote a lot but I would greatly appreciate any and all thoughts anyone has on these symptoms, if they sound like early stages of ALS (bulbar), or anything else. So far, my family doctor and neurologist don’t really have any ideas besides anxiety, but I didn’t really have any of that until recent as these seemingly basic issues continued to manifest and progress into more serious and noticeable conditions.

Sorry about the lengthy post, but thanks in advance, and I wish nothing but the absolute best for everyone on here and their friends and families.
 

Ms. Pie

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Would you mind summarizing with just the facts? I doubt anyone wants to read all this. I know I didn't want to so didn't.
 

Nighthawk

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Would you mind summarizing with just the facts? I doubt anyone wants to read all this. I know I didn't want to so didn't.
Very well put, Ms. Pie.
I also tend to overlook such lengthy posts, too much for my eyes, neck and brain with this disease.
 

edwards5257

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Giving the full story is always beneficial to give insight to physical struggles and problems .
 

Nighthawk

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Giving the full story is always beneficial to give insight to physical struggles and problems .
Well,

For somebody healthy, monitoring all these posts and going through them all shouldn't be a problem. But, many PALS here have both hands atrophied, some others are completely paralyzed using the eye gaze technology to communicate, some are on medication to control pain which makes them dizzy, and...I could go on and on.

It's not a bad thing to make an extract of the most important issues they are having and list them.
It could be easier for us to read and help...don't you think?

I remember one of these newbies who made such a long post and even detailed his sexual life on it which it was unnecessary and unrelated to his "health problems" (forum member "Here4Her" probably remembers that one).

I do not discourage such long posts but I think they should cut to the chase and make it simpler and easier to read.

Furthermore, we are not here to make diagnosis of any disease to anyone. We are not Doctors.
My ALS was diagnosed by an expert on Neuromuscular diseases, not by myself on Internet forums.


NH
 
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ottawa girl

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Birmimat -

One line did catch my attention. "Left face feeling paralysed "

That is NOT an ALS symptom. I'm thinking you ought to see an ENT. Maybe you have, but my eyes glazed over. 8) I know you are concerned, as anyone would be in your situation. Sounds like your neuro is very thorough, so that's a good.

One thing to keep in mind is that worrying can and will affect your throat. Like when one stifles sobs or hiccups. Our minds & bodies are not separate, though we often think they are.

Try to focus on other happier things, break your vitamins to get them down and avoid the foods which you know may cause you to choke. Also, maybe a sleep study would give you insight as well.

Good luck, and keep us posted.... Just shorter post! :):)
 

bluedog

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Your detailed description is pretty much how my bulbar symptoms presented and progressed, except for the inability to pig-snort and the shaking. I am not diagnosed but have other symptoms too, such as arm/leg weakness and atrophy.

Your tests so far seem to rule out a lot of other stuff that could be causing the problems. You can read through the histories here and see whether you think your symptoms are consistent with ALS.

If you can, to help ease your mind, make sure the EMG is done on the bulbar region.... tongue, face, paraspinals, etc. in addition to any other locations the neuro requests.

Do you have ALS in the family or some of the risk factors (as evidenced on this forum) such as weight lifting and vigorous exercise?
 

pearshoot

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just now saw this post didn't read, no time he has too much time on his hands definately not one finger typing
 

Birmimat

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Hi everyone - I really apologize for the length….I’m really sorry about that. I was just trying to get as much information out there to help paint a picture, but I am truly sorry and apologize. Here are just the facts as they stand today
• 35 years old.
• Difficulty swallowing started appox a year ago. Started as mechanics not feeling right during swallowing – mainly in the area under the tongue. Has progressed to today where I have to make weird and deliberate movements to swallow without choking. Liquids are the most challenging to swallow.
• Tongue movement seems normal. Difficulties are mostly muscles in neck / throat area under the tongue and jaw face muscles (most left side of jaw). Difficulty opening my mouth…muscles are really tight / fatigued. Yawning difficult – feels like I may choke when yawning. Soft pallet / back of mouth and throat area feel uncoordinated in swallowing.
• Difficult to produce certain sounds I used to be able to. Hoarse after long day of talking, speaking softer with less volume.
• Balance is slightly off.
• ENT – looked at nose, voice box, throat – no findings
• Neurologist order MRI – Clean no findings
• EMG scheduled for June
• Shaking and jittery arms and hands – recently started
 

Nighthawk

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Ok,

You say, ENT no findings; Neurologist MRI clean but...EMG scheduled for this next month.
EMG is way more sensitive at detecting nerve problems than a MRI.
So, my advice to you would be to wait for this EMG to be performed (just a month away) by your Neurologist and, ask as many questions to him as you deem necessary after this procedure is done to clarify any doubts you may have.

I hope the best for you on this matter.

Regards,


NH
 

AtTheCircleK

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Any difficulties swallowing with a straw? Do you have difficulty blowing up your cheeks? Difficulty whistling? Can you roll the Rs, or make sort of a Chewbacca sound? Does air escape your nose when blowing through your mouth (as if blowing up a balloon)? Can you gargle (like w/ mouthwash), or hold water in the back of your throat without it sort of falling in?

If you can do these things, then you probably don't have any palatal weakness, especially a year after your initial onset of symptoms.
 

Birmimat

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Atheclerk - No difficulties with using a straw....well no change in difficulties swallowing with it anyway. I have the same difficulties with or without using a straw. No difficulty whistling, but I can't roll my r's or make the chewbacca noise. When I a try it just comes out like a flat sound like I'm humming or something. I can gargle and hold water in my mouth, but not very far back without choking
 

hangingon1

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I am sorry to say that it sounds like advanced ALS. My wife lived for 4 yrs. after her diagnoses and she had those symptoms at the end of her life. Some people have a slow decline others a rapid one.
 

Nighthawk

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I am sorry to say that it sounds like advanced ALS. My wife lived for 4 yrs. after her diagnoses and she had those symptoms at the end of her life. Some people have a slow decline others a rapid one.
How can you make such a bold statement to frighten this poster?
He hasn't had an EMG just yet. An EMG is necessary to confirm or to rule out any neurological disease.
Not even his Neurologist has made a diagnosis yet and he's the expert on that field.
Making statements like this you have made diminishes the credibility of this forum and jeopardizes it.
What about if this person blindly believes what you posted and attempts something...wrong?

We have to be careful on what we post here. We might be held liable if we affirm something here that in the end results being blatantly untrue.

That's what I told him to wait for his EMG to be performed this June and to discuss thoroughly the results with his Neurologist who is the authorized person to make a diagnosis, not us as we are NO Neuros or any professionals on Medical Science.


NH
 

Cricket

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PALS
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07/2011
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CA
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ON
My brain registered "chew tobacco"...got it! chewbacca and hans solo! Lol... My bad
 
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