darrellacoustic
New member
- Joined
- Feb 14, 2015
- Messages
- 7
- Reason
- Learn about ALS
- Country
- US
- State
- FL
- City
- Naples
First of all, I would like to say that I have been a lurker here for a few years now, and I have absolutely nothing but respect and goodwill towards every PALS here. I really do pray for you guys quite often, and my heart breaks for all those impacted by this disease. My story is fairly long, so feel free to skip this thread if you are unwilling, or unable to read it all and reply.
Thank you to anyone who does.
I've had diffuse (all over) muscle twitching for about 5 months straight now. It began with a tingling sensation in my left arm and left side of my face, that progressed into body-wide twitches soon after.
About 2 years ago I had a similar fit, (All over twitching) and became worried about ALS. Eventually my worry subsided and I stopped noticing them except rarely. Now 4 months ago they began again out of nowhere, everywhere, in muscles that I hardly ever even use.
I have them in my face, my nose, my forehead, behind my ear, the top of my head, my chest, my knees, my hands, and every other muscle you can name. I recently got my first eyelid twitch a few days ago, and now it twitches every time I sneeze or yawn.
I was relieved at first because I had heard that eyelid twitches are almost always benign, and therefore clearing me of ALS, but it only took 2 minutes of searching to realize that wasn't true at all.
I saw my doctor first about 4 months ago who said I was fine, and did blood tests which all tested fine. But then the twitches became worse and I saw a neurologist. He tested my strength, and reflexes and said I seem fine, and said I likely have BFS. He scheduled an EMG, but I cancelled because after I saw him my stress was relieved and I felt like I didn't need to worry.
A few weeks went by where I didn't notice the twitches nearly as much, although they were still around at random times. Then one day, my legs began to feel hyper-sensitive, like my reflexes were being tickled, and I began to panic because I know hyperflexia is a symptom of MND. My legs were terrible that night, feeling extremely restless, and even woke me up a few times trembling. My whole bed was shaking, along with what felt like my whole body vibrating on the inside. My teeth were also chattering which made me very nervous. I made an appointment with my doctor the next day, and he test my leg strength and reflexes in my knees and said they looked fine.
He scheduled an MRI, and results came back negative. Since then, my legs are always shaking, like a vibration inside the bones, mostly under my knee where the reflex tendon is. It's constant and even goes on when I'm standing, or sleeping.
I have no weakness, and the crazy thing is, I've actually gotten stronger in my upper body since seeing the neurologist the first time, as well as gaining 5-10 lbs total since this twitching began. I have had a few days where my legs feel like jelly, but then return to normal aside from the shakiness which is almost ALWAYS there.
Other strange symptoms have been that my joints have been popping far more than usual. One morning I woke up and my right wrist hurt and was sore, then the next morning my left ankle was the same.
I have a lot "almost" cramps where i will feel the sensation of a cramp coming on, but never actually get one, but I can very easily instigate cramps. If I point my toes and scrunch my feet they will cramp every time, and if I flex my biceps more than 5 seconds or so they will also cramp. A few days ago, after doing a set of pull-ups (Which I can still do around 20 of), my whole back locked up for about a minute in a very hard cramp. When I'm sweeping at work, sometimes my forearms will cramp where I'm squeezing the broom. Aside from these, cramps hasn't been a major issue, but I do get small quick ones usually 4-5 times a day in various muscles.
As for twitches, I get a wide variety of them, but the most worrisome are the severe ones that shake my whole muscle in a hard spasm, such as my left chest muscle trembling very hard. Lately, my left leg has been trembling terribly in the quad. It's a mixture of hard twitches, very fast small twitches, and a full on vigorous trembling like I'm freezing.
I also have a "buzzing" one that will usually sit in one muscle for hours. It somtimes has an odd rhythm, such as "buzzing" for a second, then nothing for 2 seconds and then repeat, perfectly in sync each time.
Another odd symptom is a fluttering, or "purring" feeling in my chest and stomach.
I've seen 3 doctors, and a neurologist who all said it is most likely stress after testing my reflexes and strength. I've had 3 blood tests which all came back good as well. I've been taking Magnesium supplements for several months now, and I THINK it helps a little, but it's not much of a difference if any.
Lately, I've been worried because my symptoms have absolutely worsened. My twitches are virtually everywhere now, minus the tongue. My body always feels like its shaking on the inside. My twitches are mainly on my left side, but the right side is catching up now and it's pretty even at this point. The buzzing has also progressed around my body. For the longest while it was my left shoulder that was only affected. Since then, I've felt it in my right shoulder, and right forearm. A few days ago, my right forearm was twitching so hard that my ring finger jerked with every twitch.
I also have an achy pain that travels around my body, usually affecting the joints. My index finger joint has felt this, my back often is hurting in various areas, and I have occasional quick shooting pains in various body parts.
There have also been a few times since this began that I've had a little trouble catching my breath, and breathing is not nearly as smooth as it should be I feel. I breath in fine, but it always feels like I have a cold. Which btw, I have a lot, and seem to get sick all the time despite taking vitamins, eating healthy, etc.
I've read about bfs for years and know all about it, but it's hard to feel like this is normal. It can't be normal for my body to be going haywire ALL the time regardless of my stress level.
I will say though that it absolutely gets worse when I am most worried/ stressed that is .
Should I be concerned about ALS at all after 5 months (years if you consider the other episode) of body-wide twitching, and no weakness/atrophy? I am in relatively good shape, am still very strong, can do 15+ pull-ups, 40+ pull-ups, run easily etc, and have actually gained 5 -10 lbs in the last 4 or 5 months rather than losing any weight.
I do find it harder to work out now though, as I'm usually quite tired after work, and cramping lately has been a slight issue with exercise.
And now for the main, and major source of my concern.
My grandfather died of ALS, and another member of my dads side (who had the same grandfather as me) also had it.
My father however lived to be 82 and died of a heart attack, not ALS. My father has 2 other children who are much older than I (In their 50's) and they do not have ALS.
As far as I know (don't know my dad's family too well) my cousin that had ALS (who shares a grandfather with me) was diagnosed in her 50's. My grandfather was also in his 50's I believe.
I am only a 26 years old male, turning 27 this month, but I know familial ALS often affects younger people that sporadic.
Should I be worried at all about ALS? It's been a fear of mine for a long time, and my symptoms have progressed so far that it's hard to believe it's all stress.
I have an appointment with another Neuro coming up.
I should also point out that each time I've been tested by doctors (even as recently as 2 weeks ago) my reflexes and strength were fine.
I've been given anti-anxiety medications, but the only one that didn't make me sick was Klonipin, which DOES seem to help a lot, but much less now then the first couple times I took it. At first I was excited, because this made me think that the twitches really were stress related, but as I've learned recently, klonipin also helps twitches and cramping in people with ALS as well.
Please give me any help and advice. I have a girlfriend that I very much want to marry, but I'm terrified of marrying her or asking her until after I know for sure I'm ok. I don't want to put that kind of stress and hurt on her. I feel like it would be very selfish of me to do so.
Thank you to anyone who does.
I've had diffuse (all over) muscle twitching for about 5 months straight now. It began with a tingling sensation in my left arm and left side of my face, that progressed into body-wide twitches soon after.
About 2 years ago I had a similar fit, (All over twitching) and became worried about ALS. Eventually my worry subsided and I stopped noticing them except rarely. Now 4 months ago they began again out of nowhere, everywhere, in muscles that I hardly ever even use.
I have them in my face, my nose, my forehead, behind my ear, the top of my head, my chest, my knees, my hands, and every other muscle you can name. I recently got my first eyelid twitch a few days ago, and now it twitches every time I sneeze or yawn.
I was relieved at first because I had heard that eyelid twitches are almost always benign, and therefore clearing me of ALS, but it only took 2 minutes of searching to realize that wasn't true at all.
I saw my doctor first about 4 months ago who said I was fine, and did blood tests which all tested fine. But then the twitches became worse and I saw a neurologist. He tested my strength, and reflexes and said I seem fine, and said I likely have BFS. He scheduled an EMG, but I cancelled because after I saw him my stress was relieved and I felt like I didn't need to worry.
A few weeks went by where I didn't notice the twitches nearly as much, although they were still around at random times. Then one day, my legs began to feel hyper-sensitive, like my reflexes were being tickled, and I began to panic because I know hyperflexia is a symptom of MND. My legs were terrible that night, feeling extremely restless, and even woke me up a few times trembling. My whole bed was shaking, along with what felt like my whole body vibrating on the inside. My teeth were also chattering which made me very nervous. I made an appointment with my doctor the next day, and he test my leg strength and reflexes in my knees and said they looked fine.
He scheduled an MRI, and results came back negative. Since then, my legs are always shaking, like a vibration inside the bones, mostly under my knee where the reflex tendon is. It's constant and even goes on when I'm standing, or sleeping.
I have no weakness, and the crazy thing is, I've actually gotten stronger in my upper body since seeing the neurologist the first time, as well as gaining 5-10 lbs total since this twitching began. I have had a few days where my legs feel like jelly, but then return to normal aside from the shakiness which is almost ALWAYS there.
Other strange symptoms have been that my joints have been popping far more than usual. One morning I woke up and my right wrist hurt and was sore, then the next morning my left ankle was the same.
I have a lot "almost" cramps where i will feel the sensation of a cramp coming on, but never actually get one, but I can very easily instigate cramps. If I point my toes and scrunch my feet they will cramp every time, and if I flex my biceps more than 5 seconds or so they will also cramp. A few days ago, after doing a set of pull-ups (Which I can still do around 20 of), my whole back locked up for about a minute in a very hard cramp. When I'm sweeping at work, sometimes my forearms will cramp where I'm squeezing the broom. Aside from these, cramps hasn't been a major issue, but I do get small quick ones usually 4-5 times a day in various muscles.
As for twitches, I get a wide variety of them, but the most worrisome are the severe ones that shake my whole muscle in a hard spasm, such as my left chest muscle trembling very hard. Lately, my left leg has been trembling terribly in the quad. It's a mixture of hard twitches, very fast small twitches, and a full on vigorous trembling like I'm freezing.
I also have a "buzzing" one that will usually sit in one muscle for hours. It somtimes has an odd rhythm, such as "buzzing" for a second, then nothing for 2 seconds and then repeat, perfectly in sync each time.
Another odd symptom is a fluttering, or "purring" feeling in my chest and stomach.
I've seen 3 doctors, and a neurologist who all said it is most likely stress after testing my reflexes and strength. I've had 3 blood tests which all came back good as well. I've been taking Magnesium supplements for several months now, and I THINK it helps a little, but it's not much of a difference if any.
Lately, I've been worried because my symptoms have absolutely worsened. My twitches are virtually everywhere now, minus the tongue. My body always feels like its shaking on the inside. My twitches are mainly on my left side, but the right side is catching up now and it's pretty even at this point. The buzzing has also progressed around my body. For the longest while it was my left shoulder that was only affected. Since then, I've felt it in my right shoulder, and right forearm. A few days ago, my right forearm was twitching so hard that my ring finger jerked with every twitch.
I also have an achy pain that travels around my body, usually affecting the joints. My index finger joint has felt this, my back often is hurting in various areas, and I have occasional quick shooting pains in various body parts.
There have also been a few times since this began that I've had a little trouble catching my breath, and breathing is not nearly as smooth as it should be I feel. I breath in fine, but it always feels like I have a cold. Which btw, I have a lot, and seem to get sick all the time despite taking vitamins, eating healthy, etc.
I've read about bfs for years and know all about it, but it's hard to feel like this is normal. It can't be normal for my body to be going haywire ALL the time regardless of my stress level.
I will say though that it absolutely gets worse when I am most worried/ stressed that is .
Should I be concerned about ALS at all after 5 months (years if you consider the other episode) of body-wide twitching, and no weakness/atrophy? I am in relatively good shape, am still very strong, can do 15+ pull-ups, 40+ pull-ups, run easily etc, and have actually gained 5 -10 lbs in the last 4 or 5 months rather than losing any weight.
I do find it harder to work out now though, as I'm usually quite tired after work, and cramping lately has been a slight issue with exercise.
And now for the main, and major source of my concern.
My grandfather died of ALS, and another member of my dads side (who had the same grandfather as me) also had it.
My father however lived to be 82 and died of a heart attack, not ALS. My father has 2 other children who are much older than I (In their 50's) and they do not have ALS.
As far as I know (don't know my dad's family too well) my cousin that had ALS (who shares a grandfather with me) was diagnosed in her 50's. My grandfather was also in his 50's I believe.
I am only a 26 years old male, turning 27 this month, but I know familial ALS often affects younger people that sporadic.
Should I be worried at all about ALS? It's been a fear of mine for a long time, and my symptoms have progressed so far that it's hard to believe it's all stress.
I have an appointment with another Neuro coming up.
I should also point out that each time I've been tested by doctors (even as recently as 2 weeks ago) my reflexes and strength were fine.
I've been given anti-anxiety medications, but the only one that didn't make me sick was Klonipin, which DOES seem to help a lot, but much less now then the first couple times I took it. At first I was excited, because this made me think that the twitches really were stress related, but as I've learned recently, klonipin also helps twitches and cramping in people with ALS as well.
Please give me any help and advice. I have a girlfriend that I very much want to marry, but I'm terrified of marrying her or asking her until after I know for sure I'm ok. I don't want to put that kind of stress and hurt on her. I feel like it would be very selfish of me to do so.
