Birmimat
New member
- Joined
- Mar 26, 2013
- Messages
- 3
- Reason
- Learn about ALS
- Country
- US
- State
- Oregon
- City
- Hillsboro
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.
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.