hurleydude4815
New member
- Joined
- Jan 14, 2019
- Messages
- 5
- Reason
- Learn about ALS
- Country
- US
- State
- Virginia
- City
- Richmond
Hi All,
First I wanted to say thank you to all of the folks who take the time to read these posts and share their opinions. I've been reading on these forums for a little while now and figured it was finally time to share my concerns...
Before I go into detail about my story, I'll quickly summarize my symptoms for anyone that wants a short version: I'm a 27 year old male who, for the last few months, has had diffuse body twitching, primarily in the legs and almost constant in both feet, especially in 1 or 2 particular locations that seems to be triggered by standing. Both legs feel constantly heavy and weak each day, and my ankle muscles/tendons feel like they need to "adjust" to keep me in place while standing still. I have noticed muscles that tremble with very little movement in my shoulders, and I have a tremor in both arms. But, I can still walk on my toes and heels, and my although I feel slowed down. What worries me the most is my saliva and swallowing - over the last 1-2 weeks, I feel like I've had excess saliva, constantly feel like I need to swallow, and sometimes I feel like I'm swallowing constant thick mucus. My throat feels tight around 4-5 pm each day and sometimes painful, and I've needed to swallow repeatedly to get food down on occasion. I've also noticed twitching when I look at my tongue, that I can't feel, but I don't seem to have any speech problems or problems moving the tongue.
Anyway, this is a longer version for anyone who is interested...
Last April (04/2018), I started feeling a very occasional, very localized twitching around my left shin. That quickly went away, but I developed an intense, brief, come-and-go pain around that area for the next 3 months, that happened almost every day, sometimes throughout the day. For background, I'm a student in graduate school and have been under a lot of stress, but I immediately feared the worst (bone cancer, etc). Around July, those symptoms disappeared, X-rays were negative, and I felt fine. I have no idea if this relates to my current symptoms or why I'm worried about ALS, but because it happened in the legs I figured it was worth sharing.
Around September, that pain returned for another 2-3 months or so. But that's really not what worries me - in October, I noticed twitching all over both legs. I noticed it mostly when I was sitting or lying down, but sometimes it could feel like a fireworks show going off in my legs. I felt the twitching, but could not see it, and if I moved the leg to try to observe a fasciculation, they would temporarily stop. I noticed the twitching every few days or so in October, but by November/December, they were constant in the legs. I also started noticing them basically anywhere - in the arms, shoulders, thighs, legs, feet, ankles, hands, lips, cheeks, eyelids, even sometimes on my ears and abdomen. In those places, they mostly come and go (I have "runs" of twitches where they hop around), but now they are basically constant in both feet and ankles. Every day, almost all throughout the day, I feel them in the feet, ankles, and sometimes lower legs. Sometimes it feels like a buzzing in the feet, sometimes worms crawling all over my feet, sometimes actual thumbing twitches. What really worries me is there is one spot in particular in my left foot/ankle, right at the base of the ankle, which has big thumping twitches from time to time - but those twitches are usually brought ON by standing. If I stand for even 5 minutes, I feel twitching in that spot. If I walk and then I stop walking, I feel twitching in that spot. Because it's so localized, and brought on with standing/activity, I fear it's something more worrisome than BFS.
What worries me even more is that I've felt progressive weakness, mostly in the legs. While home over the holidays in late December, I felt like I couldn't stand in one place for more than a few minutes before my legs got fatigued. They constantly feel weak, especially when I stand on them, like I'm standing on jelly legs or sometimes like lead pipes. When I try to stand still, my ankle balance seems off, almost as if the muscles/tendons are in a tug of war trying to keep me balanced. The fact that the feet are usually twitching, too, during this time does NOT help.
As far as leg pains, I still have them, but they're different. Now they feel like aching soreness that can migrate to place to place, primarily in my legs. It's not quite a "true cramp" but it's almost like a cramp is about to come on. When I get those varies, sometimes when I'm at rest, and they migrate around - sometimes in the thighs, sometimes around the shins and calves, sometimes in my biceps and shoulders in my arms.
I've also noticed weakness and trembling in both arms. I do have a baseline tremor in my hands that I've always had, but it's seemed to have gotten worse. If I hold my arms out, the hands shake. If I hold my phone up for too long or try to write on a whiteboard/chalkboard, I feel a burning, fatigued feeling in my upper arm / shoulder that I've NEVER felt before, within even a minute.
What worries me the most is my swallowing. For the last few months, I've felt a "post-nasal drip" sensation of having to swallow thick mucus. But it seems to have gotten WORSE and progressing. My fear for bulbar ALS started when I looked in the mirror one day and noticed twitching on my tongue. The sides of my tongue tremble, but I'm talking about twitching on the center of my tongue, like the skin is being pinched in one spot, and then another spot. I can't feel them unless I'm looking at my tongue in the mirror, and sometimes they seem worse than others. I reassured myself thinking "I can still talk and swallow fine", but the swallowing has gotten WORSE. Over the last 1-2 weeks, I've felt excessive saliva in my mouth, and a need to constantly swallow it. I feel like if I don't consciously swallow it, I won't. To make matters worse, sometimes I feel a thick mucus in my throat that I have to constantly swallow and clear. It seems to be hurting my vocal cords, and there's a spot around my Adam's apple that - nearly every day now - tightens up and hurts. And, I have been having problems swallowing solid foods. I've noticed it takes more focus and difficulty to get the food to go down, and sometimes I even need to swallow multiple times to get something to go down. That all started this week, and has never happened to me before, and part of the reason I'm posting here today.
To me, this seems like it could be symptoms of ALS across my body, from my feet to my ankles to my legs to my arms and now throat/mouth. The only reassuring things that I'm holding onto as this possibly being benign: I can still toe walk and heel walk, I can still walk without much difficulty (although I "think" I'm constantly dragging my toes...), I can still talk fine (even if sometimes I think my voice is hoarse, or sometimes I'm mispronouncing/stumbling over my words), I can still move my tongue in all directions. I have NO idea about atrophy, I've scanned my body and "thought" it could be in places here or there, especially in my feet and ankles. But I keep telling myself that I've never really looked for it before, and what I could be seeing was always there.
Anyway, I've seen my PCP, who noted benign possibilities but said we have to keep ALS on the list (which freaked me out pretty bad). He did extensive bloodwork which was all negative. I have an appointment with the neurologist next Tuesday, and I will see where everything goes from there. I just have so much pent up anxiety about this, I really needed to share my story and hear anyone's opinions on this. Is there any way this could be BFS with cramping/pain, and not ALS? I seem to have almost all of the ALS symptoms, which seem to be progressing over the last few months. Is this how ALS can present? I am some one that's very much prone to anxiety, especially health anxiety, so I'm hoping this is all a bad manifestation of BFS. But with the recent "bulbar-like" symptoms I've been finding, I just can't reassure myself anymore. It's going to be a long week waiting for the neurologist, and probably even longer for any results.
Thanks for your time.
First I wanted to say thank you to all of the folks who take the time to read these posts and share their opinions. I've been reading on these forums for a little while now and figured it was finally time to share my concerns...
Before I go into detail about my story, I'll quickly summarize my symptoms for anyone that wants a short version: I'm a 27 year old male who, for the last few months, has had diffuse body twitching, primarily in the legs and almost constant in both feet, especially in 1 or 2 particular locations that seems to be triggered by standing. Both legs feel constantly heavy and weak each day, and my ankle muscles/tendons feel like they need to "adjust" to keep me in place while standing still. I have noticed muscles that tremble with very little movement in my shoulders, and I have a tremor in both arms. But, I can still walk on my toes and heels, and my although I feel slowed down. What worries me the most is my saliva and swallowing - over the last 1-2 weeks, I feel like I've had excess saliva, constantly feel like I need to swallow, and sometimes I feel like I'm swallowing constant thick mucus. My throat feels tight around 4-5 pm each day and sometimes painful, and I've needed to swallow repeatedly to get food down on occasion. I've also noticed twitching when I look at my tongue, that I can't feel, but I don't seem to have any speech problems or problems moving the tongue.
Anyway, this is a longer version for anyone who is interested...
Last April (04/2018), I started feeling a very occasional, very localized twitching around my left shin. That quickly went away, but I developed an intense, brief, come-and-go pain around that area for the next 3 months, that happened almost every day, sometimes throughout the day. For background, I'm a student in graduate school and have been under a lot of stress, but I immediately feared the worst (bone cancer, etc). Around July, those symptoms disappeared, X-rays were negative, and I felt fine. I have no idea if this relates to my current symptoms or why I'm worried about ALS, but because it happened in the legs I figured it was worth sharing.
Around September, that pain returned for another 2-3 months or so. But that's really not what worries me - in October, I noticed twitching all over both legs. I noticed it mostly when I was sitting or lying down, but sometimes it could feel like a fireworks show going off in my legs. I felt the twitching, but could not see it, and if I moved the leg to try to observe a fasciculation, they would temporarily stop. I noticed the twitching every few days or so in October, but by November/December, they were constant in the legs. I also started noticing them basically anywhere - in the arms, shoulders, thighs, legs, feet, ankles, hands, lips, cheeks, eyelids, even sometimes on my ears and abdomen. In those places, they mostly come and go (I have "runs" of twitches where they hop around), but now they are basically constant in both feet and ankles. Every day, almost all throughout the day, I feel them in the feet, ankles, and sometimes lower legs. Sometimes it feels like a buzzing in the feet, sometimes worms crawling all over my feet, sometimes actual thumbing twitches. What really worries me is there is one spot in particular in my left foot/ankle, right at the base of the ankle, which has big thumping twitches from time to time - but those twitches are usually brought ON by standing. If I stand for even 5 minutes, I feel twitching in that spot. If I walk and then I stop walking, I feel twitching in that spot. Because it's so localized, and brought on with standing/activity, I fear it's something more worrisome than BFS.
What worries me even more is that I've felt progressive weakness, mostly in the legs. While home over the holidays in late December, I felt like I couldn't stand in one place for more than a few minutes before my legs got fatigued. They constantly feel weak, especially when I stand on them, like I'm standing on jelly legs or sometimes like lead pipes. When I try to stand still, my ankle balance seems off, almost as if the muscles/tendons are in a tug of war trying to keep me balanced. The fact that the feet are usually twitching, too, during this time does NOT help.
As far as leg pains, I still have them, but they're different. Now they feel like aching soreness that can migrate to place to place, primarily in my legs. It's not quite a "true cramp" but it's almost like a cramp is about to come on. When I get those varies, sometimes when I'm at rest, and they migrate around - sometimes in the thighs, sometimes around the shins and calves, sometimes in my biceps and shoulders in my arms.
I've also noticed weakness and trembling in both arms. I do have a baseline tremor in my hands that I've always had, but it's seemed to have gotten worse. If I hold my arms out, the hands shake. If I hold my phone up for too long or try to write on a whiteboard/chalkboard, I feel a burning, fatigued feeling in my upper arm / shoulder that I've NEVER felt before, within even a minute.
What worries me the most is my swallowing. For the last few months, I've felt a "post-nasal drip" sensation of having to swallow thick mucus. But it seems to have gotten WORSE and progressing. My fear for bulbar ALS started when I looked in the mirror one day and noticed twitching on my tongue. The sides of my tongue tremble, but I'm talking about twitching on the center of my tongue, like the skin is being pinched in one spot, and then another spot. I can't feel them unless I'm looking at my tongue in the mirror, and sometimes they seem worse than others. I reassured myself thinking "I can still talk and swallow fine", but the swallowing has gotten WORSE. Over the last 1-2 weeks, I've felt excessive saliva in my mouth, and a need to constantly swallow it. I feel like if I don't consciously swallow it, I won't. To make matters worse, sometimes I feel a thick mucus in my throat that I have to constantly swallow and clear. It seems to be hurting my vocal cords, and there's a spot around my Adam's apple that - nearly every day now - tightens up and hurts. And, I have been having problems swallowing solid foods. I've noticed it takes more focus and difficulty to get the food to go down, and sometimes I even need to swallow multiple times to get something to go down. That all started this week, and has never happened to me before, and part of the reason I'm posting here today.
To me, this seems like it could be symptoms of ALS across my body, from my feet to my ankles to my legs to my arms and now throat/mouth. The only reassuring things that I'm holding onto as this possibly being benign: I can still toe walk and heel walk, I can still walk without much difficulty (although I "think" I'm constantly dragging my toes...), I can still talk fine (even if sometimes I think my voice is hoarse, or sometimes I'm mispronouncing/stumbling over my words), I can still move my tongue in all directions. I have NO idea about atrophy, I've scanned my body and "thought" it could be in places here or there, especially in my feet and ankles. But I keep telling myself that I've never really looked for it before, and what I could be seeing was always there.
Anyway, I've seen my PCP, who noted benign possibilities but said we have to keep ALS on the list (which freaked me out pretty bad). He did extensive bloodwork which was all negative. I have an appointment with the neurologist next Tuesday, and I will see where everything goes from there. I just have so much pent up anxiety about this, I really needed to share my story and hear anyone's opinions on this. Is there any way this could be BFS with cramping/pain, and not ALS? I seem to have almost all of the ALS symptoms, which seem to be progressing over the last few months. Is this how ALS can present? I am some one that's very much prone to anxiety, especially health anxiety, so I'm hoping this is all a bad manifestation of BFS. But with the recent "bulbar-like" symptoms I've been finding, I just can't reassure myself anymore. It's going to be a long week waiting for the neurologist, and probably even longer for any results.
Thanks for your time.