RS1984
New member
- Joined
- Nov 3, 2021
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello,
First of all, I just want to thank everybody for taking the time to post on here and answer questions. I really admire the courage being shown and appreciate the willingness to help others. I have viewed the Read Before Posting thread multiple times, but there are some things I'm quite curious about, and I've been frustrated by my lack of answers from doctors to this point.
I am a 36 year old male, and have been having some strange symptoms since February of this year. The prevailing symptom I've had has just been persistent fatigue. Constantly tired all day everyday. One of my other earliest symptoms was trouble swallowing. I'm not choking on food or anything, but it just seems more difficult to swallow than it used to be. Previously it was effortless, and now it takes some effort. I also have noticed that my voice feels weaker than it used to. I have to strain a little bit to speak, and I find myself clearing my throat constantly. I had some tests done from an ENT to rule out cancer (upper scope), and they also determined that I was suffering from flash laryngeal penetration, which the doctor said was not overly abnormal. It seems to be getting worse and worse when I eat, especially with meats. The swallowing and weak voice has been a big concern for me.
Early on, I was also having some strange discomfort, essentially all on the right side of my body (jaw, neck, chest, arm, leg). I wouldn't call it pain, but it just felt strange. I also have noticed some shortness of breath. Nothing major, but just sees like I can't breathe as deeply as I used to, and when I attempt to work out, I'm pretty much panting and out of breath immediately. I had a chest CT to rule out lung issues, as well as an EKG to confirm heart is in good shape.
My right arm in particular seems to be weaker than it used to be. When I hold an object in my hand for a while, my grip feels like it gets weak much more quickly than my left arm, and I've noticed a bit of a tremor in that hand too. I'm not "failing" to do things, as it specifies in the Read Before Posting, but I do feel like my right arm has less muscle mass on the triceps and forearm area than my left (and I'm right handed too, so it should be my stronger arm). I wouldn't call it pain that I feel, but when I eat with a fork, write with a pen, or even brush my teeth, I feel basically a soreness in that arm/hand, kind of the way you would feel after your body is tired from a long workout and your muscles are sore from it. But only in that right arm/hand.
Over the past few months, I've noticed a bit of a change in the my ability to speak. My wife doesn't notice it, and nobody else has mentioned it to me (as mentioned in the Read Before Posting), but I feel like it's tougher for me to pronounce certain words (particularly words like opportunity, continue, etc). It's very noticeable to me, and previously when I would read, it was quick and easy and I never stumbled over any words. Lately, I've found myself rereading and repeating and taking much longer to spit stuff like that out. I feel like it has been getting worse and worse, and I find myself slurring words that I'm used to pronouncing with ease. When I open my mouth very wide or when I move my tongue around a lot, I feel a strange feeling in the back of my head, almost just like pressure back there. Same goes for when I talk for a long period of time. I feel like weird pressure or aching just on the back of my head right above my neck.
I also began noticing some twitching beginning in my left eye around April. It was something that occurred a few times a day, every day for a few weeks, then stopped and moved to my right eye. That stopped for a couple months, but then early September, I began to notice that twitching on the right side of my head (near my temple and above my ear). I've noticed some on my jaw too. My eye twitching returned a few weeks ago in both eyes. Every time I close my eyes and reopen them, my eyelids and the bottom part below my eyelid will twitch rapidly for a few seconds, then stop. I've noticed twitching also in my triceps area on my left arm, my left leg just above the knee, and my right calf. They don't occur in the arms and legs everyday, but when they do, I cannot get them to stop. On Sunday, the twitching in my left arm was going up and down the arm for about 5 minutes. It would twice up near the top of my bicep, and then down to the elbow, then in between, and back up. It was terrifying, because that was really the first time I've seen the twitches bounce up and down to multiple places like that, and nothing I did would stop it. When it stopped, as soon as I flexed the muscle, it would start again. Today, it was my left calf that was twitching in bed this morning as I woke up, and nothing could make it stop. It was twitching very fast, and finally once I stood up, it eventually did stop.
My muscles on the right side of my body, namely forearm (probably the worst), tricep, and leg/calf seem to be a bit sore more often and very quickly. If I go for a walk, my right side muscles will be more sore than my left, and I'll feel that crampy muscle soreness on that right calf only. I don't quite know the difference between a cramp and spasticity and soreness, so I may be using those words words wrong. Even when I'm sitting in a chair with arms on it, the back of my right arm feels very strange, almost like it's twitching/shaking.
Another thing that came back in my bloodwork was low free testosterone, which my doctor said may cause some of my ongoing fatigue. However, I've read that low T is common with motor diseases, so I didn't know if that potentially was the root of everything.
Also for about a month, I've had a feeling in different parts of my body that was almost like a spider or bug was crawling on me. I would feel it on my leg, and then I'd check and it would go away. Or on my arm. Just felt like something was barely brushing up against the hair on my leg/arm. It doesn't last too long, but it would go to different areas on my body. I've never experienced any of these symptoms until recently, and it seems they've gotten much more pronounced in recent months and weeks.
There have just been so many symptoms that have concerned me, and I know according to the Read Before Posting that some of these things are not at the point of "failure" yet. But wouldn't this weakness maybe be the first step before I actually fail to perform a task? I know different diseases can progress at different paces, so I worry that I may just have the very beginning stages and be in a situation where things will progressively get even worse.
Sorry to type so much and keep going on, but it's just a lot of info to get out there. Thank you all so much for everything you do. I truly appreciate any time you spend reading/responding to this post.
First of all, I just want to thank everybody for taking the time to post on here and answer questions. I really admire the courage being shown and appreciate the willingness to help others. I have viewed the Read Before Posting thread multiple times, but there are some things I'm quite curious about, and I've been frustrated by my lack of answers from doctors to this point.
I am a 36 year old male, and have been having some strange symptoms since February of this year. The prevailing symptom I've had has just been persistent fatigue. Constantly tired all day everyday. One of my other earliest symptoms was trouble swallowing. I'm not choking on food or anything, but it just seems more difficult to swallow than it used to be. Previously it was effortless, and now it takes some effort. I also have noticed that my voice feels weaker than it used to. I have to strain a little bit to speak, and I find myself clearing my throat constantly. I had some tests done from an ENT to rule out cancer (upper scope), and they also determined that I was suffering from flash laryngeal penetration, which the doctor said was not overly abnormal. It seems to be getting worse and worse when I eat, especially with meats. The swallowing and weak voice has been a big concern for me.
Early on, I was also having some strange discomfort, essentially all on the right side of my body (jaw, neck, chest, arm, leg). I wouldn't call it pain, but it just felt strange. I also have noticed some shortness of breath. Nothing major, but just sees like I can't breathe as deeply as I used to, and when I attempt to work out, I'm pretty much panting and out of breath immediately. I had a chest CT to rule out lung issues, as well as an EKG to confirm heart is in good shape.
My right arm in particular seems to be weaker than it used to be. When I hold an object in my hand for a while, my grip feels like it gets weak much more quickly than my left arm, and I've noticed a bit of a tremor in that hand too. I'm not "failing" to do things, as it specifies in the Read Before Posting, but I do feel like my right arm has less muscle mass on the triceps and forearm area than my left (and I'm right handed too, so it should be my stronger arm). I wouldn't call it pain that I feel, but when I eat with a fork, write with a pen, or even brush my teeth, I feel basically a soreness in that arm/hand, kind of the way you would feel after your body is tired from a long workout and your muscles are sore from it. But only in that right arm/hand.
Over the past few months, I've noticed a bit of a change in the my ability to speak. My wife doesn't notice it, and nobody else has mentioned it to me (as mentioned in the Read Before Posting), but I feel like it's tougher for me to pronounce certain words (particularly words like opportunity, continue, etc). It's very noticeable to me, and previously when I would read, it was quick and easy and I never stumbled over any words. Lately, I've found myself rereading and repeating and taking much longer to spit stuff like that out. I feel like it has been getting worse and worse, and I find myself slurring words that I'm used to pronouncing with ease. When I open my mouth very wide or when I move my tongue around a lot, I feel a strange feeling in the back of my head, almost just like pressure back there. Same goes for when I talk for a long period of time. I feel like weird pressure or aching just on the back of my head right above my neck.
I also began noticing some twitching beginning in my left eye around April. It was something that occurred a few times a day, every day for a few weeks, then stopped and moved to my right eye. That stopped for a couple months, but then early September, I began to notice that twitching on the right side of my head (near my temple and above my ear). I've noticed some on my jaw too. My eye twitching returned a few weeks ago in both eyes. Every time I close my eyes and reopen them, my eyelids and the bottom part below my eyelid will twitch rapidly for a few seconds, then stop. I've noticed twitching also in my triceps area on my left arm, my left leg just above the knee, and my right calf. They don't occur in the arms and legs everyday, but when they do, I cannot get them to stop. On Sunday, the twitching in my left arm was going up and down the arm for about 5 minutes. It would twice up near the top of my bicep, and then down to the elbow, then in between, and back up. It was terrifying, because that was really the first time I've seen the twitches bounce up and down to multiple places like that, and nothing I did would stop it. When it stopped, as soon as I flexed the muscle, it would start again. Today, it was my left calf that was twitching in bed this morning as I woke up, and nothing could make it stop. It was twitching very fast, and finally once I stood up, it eventually did stop.
My muscles on the right side of my body, namely forearm (probably the worst), tricep, and leg/calf seem to be a bit sore more often and very quickly. If I go for a walk, my right side muscles will be more sore than my left, and I'll feel that crampy muscle soreness on that right calf only. I don't quite know the difference between a cramp and spasticity and soreness, so I may be using those words words wrong. Even when I'm sitting in a chair with arms on it, the back of my right arm feels very strange, almost like it's twitching/shaking.
Another thing that came back in my bloodwork was low free testosterone, which my doctor said may cause some of my ongoing fatigue. However, I've read that low T is common with motor diseases, so I didn't know if that potentially was the root of everything.
Also for about a month, I've had a feeling in different parts of my body that was almost like a spider or bug was crawling on me. I would feel it on my leg, and then I'd check and it would go away. Or on my arm. Just felt like something was barely brushing up against the hair on my leg/arm. It doesn't last too long, but it would go to different areas on my body. I've never experienced any of these symptoms until recently, and it seems they've gotten much more pronounced in recent months and weeks.
There have just been so many symptoms that have concerned me, and I know according to the Read Before Posting that some of these things are not at the point of "failure" yet. But wouldn't this weakness maybe be the first step before I actually fail to perform a task? I know different diseases can progress at different paces, so I worry that I may just have the very beginning stages and be in a situation where things will progressively get even worse.
Sorry to type so much and keep going on, but it's just a lot of info to get out there. Thank you all so much for everything you do. I truly appreciate any time you spend reading/responding to this post.