Dpm00
Member
- Joined
- Apr 21, 2013
- Messages
- 12
- Reason
- Learn about ALS
- Country
- US
- State
- Ny
- City
- New York
**I've decided to start my own thread: I've answered under another thread, however not sure if pple would be able to see it, as it was from awhile ago: sorry for the double post, I'm not savvy on forum dedicate.
Dear community
Thank you for reading my post. I write you today in hopes of getting a clearer understanding of my symptoms and ALS. I understand you guys are not Dr's, however as I read through the threads it individuals living with ALS seem to have a greater understanding than professionals, at times. After all, it is you who feel the weight of this terrible disease. A little about myself: I'm a 36 yr old male, I'm active in the gym (lifting 5 days weekly)and play hockey a few times a week. My muscles are often sore, at times feel as though they are about to cramp, but dont and yes, I twitch. A lot. I've never given it much thought until I realized how often it occurred. As I sit now, I can feel all types, the jerky type, bubbling one ( kinda feels like a fart under the skin) however most of the time they pop. Is there any spacific type associated? Today they seem more concentrated on left calve and around that general area, just above the Achilles' tendon, although I also feel ones popping off in my right shoulder, both thigh, buttocks and calve. most of the time, they're spread out around my body. Naturally I looked up my twitching symptoms in google and of course regret it! I've read up on BFS, and sounds as though my symptoms point in that direction, however the ALS possibility continues to loom. This week I started twitching on my tongue. That's a new one. I now feel like my mouth gets tired eating. I don't slur, but I'll find myself thinking I will and in mid sentence ill stumble or sound as though I slurred. Physically, I do feel as though I've lost a step in hockey, my hands feel a bit dumb, but I'm able to button my shirt, lift heavy objects, walk in my toes, jump, and walk on heels... Pretty much, done all the self hypochondriac tests one would administer on themselves when stressed about illness. Ive even had my wife and others take these tests. Today, at hockey i asked my friend to stand on his tippy toes one foot at a time so that I could compare my own performance in balance. I never explained to him why, just told him I was messing with him and wanted to see him hope about like a crazy person.
I have a fair amount of muscle on me is it possible that the twitching is happening in smaller areas or muscles as I compensate with my other muscles around it? I've read clinical weakness comes before twitching, but I've also read individuals with ALS who experienced body wide twitching w/o really feel weak. At this point I do not know what to believe. I went to see an 80 yr old Italian dr earlier this week, I told him about my twitching and he proceeded to educate me on diabetes, high blood pressure and cholesterol, never really addressing my concern. When I reminded him why I was there and my fear of ALS, he said, "don't worry, you don't have it". He was a sweet man with kind bedside manner but I insisted on a simple reflex test. He hit me a few times with the hammer, commented my right leg was heavier than my left. This freaked me out, I asked him what did the reflex test show you, his answer, "nothing, you're fine". I said, you sure, are you just saying that? and in Italian he said, I'm not bullshitting you, go home and eat a plate of pasta. I really want to believe him, behind those kind old eyes I want to believe he was being truthful, and not thinking statistically, I'm too young, or I was just over anxious.
I have an apt scheduled for a neurologist this coming week. I've done so much research that I've exhausted my head in believing I have an illness, even against my better judgement. But with every twitch there is a reminder of what I may have. I know it can't be lack of calcium, I eat tums like candy all day bc of my GERD ( can't have that plate of pasta sadly) which I take meds for, however the twitch its not a common side effect.
Like I've said, I've read many posts by ALS fighters, friends, family, caretakers and people like me, alarmed, worried, and stressed. We've all asked the same questions, raised many of the same concerns, I've sworn I wouldn't need to reach out, here I am. Thank you for hearing me out, writing this has made me feel a little better. I'm not sure how you've perceived my tone, but I can say, I'm bruised terribly by fear and anxiety.
Sincerely,
Dpm
Dear community
Thank you for reading my post. I write you today in hopes of getting a clearer understanding of my symptoms and ALS. I understand you guys are not Dr's, however as I read through the threads it individuals living with ALS seem to have a greater understanding than professionals, at times. After all, it is you who feel the weight of this terrible disease. A little about myself: I'm a 36 yr old male, I'm active in the gym (lifting 5 days weekly)and play hockey a few times a week. My muscles are often sore, at times feel as though they are about to cramp, but dont and yes, I twitch. A lot. I've never given it much thought until I realized how often it occurred. As I sit now, I can feel all types, the jerky type, bubbling one ( kinda feels like a fart under the skin) however most of the time they pop. Is there any spacific type associated? Today they seem more concentrated on left calve and around that general area, just above the Achilles' tendon, although I also feel ones popping off in my right shoulder, both thigh, buttocks and calve. most of the time, they're spread out around my body. Naturally I looked up my twitching symptoms in google and of course regret it! I've read up on BFS, and sounds as though my symptoms point in that direction, however the ALS possibility continues to loom. This week I started twitching on my tongue. That's a new one. I now feel like my mouth gets tired eating. I don't slur, but I'll find myself thinking I will and in mid sentence ill stumble or sound as though I slurred. Physically, I do feel as though I've lost a step in hockey, my hands feel a bit dumb, but I'm able to button my shirt, lift heavy objects, walk in my toes, jump, and walk on heels... Pretty much, done all the self hypochondriac tests one would administer on themselves when stressed about illness. Ive even had my wife and others take these tests. Today, at hockey i asked my friend to stand on his tippy toes one foot at a time so that I could compare my own performance in balance. I never explained to him why, just told him I was messing with him and wanted to see him hope about like a crazy person.
I have a fair amount of muscle on me is it possible that the twitching is happening in smaller areas or muscles as I compensate with my other muscles around it? I've read clinical weakness comes before twitching, but I've also read individuals with ALS who experienced body wide twitching w/o really feel weak. At this point I do not know what to believe. I went to see an 80 yr old Italian dr earlier this week, I told him about my twitching and he proceeded to educate me on diabetes, high blood pressure and cholesterol, never really addressing my concern. When I reminded him why I was there and my fear of ALS, he said, "don't worry, you don't have it". He was a sweet man with kind bedside manner but I insisted on a simple reflex test. He hit me a few times with the hammer, commented my right leg was heavier than my left. This freaked me out, I asked him what did the reflex test show you, his answer, "nothing, you're fine". I said, you sure, are you just saying that? and in Italian he said, I'm not bullshitting you, go home and eat a plate of pasta. I really want to believe him, behind those kind old eyes I want to believe he was being truthful, and not thinking statistically, I'm too young, or I was just over anxious.
I have an apt scheduled for a neurologist this coming week. I've done so much research that I've exhausted my head in believing I have an illness, even against my better judgement. But with every twitch there is a reminder of what I may have. I know it can't be lack of calcium, I eat tums like candy all day bc of my GERD ( can't have that plate of pasta sadly) which I take meds for, however the twitch its not a common side effect.
Like I've said, I've read many posts by ALS fighters, friends, family, caretakers and people like me, alarmed, worried, and stressed. We've all asked the same questions, raised many of the same concerns, I've sworn I wouldn't need to reach out, here I am. Thank you for hearing me out, writing this has made me feel a little better. I'm not sure how you've perceived my tone, but I can say, I'm bruised terribly by fear and anxiety.
Sincerely,
Dpm