My twitching is getting far worse
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wright
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Hey Chris
It sure sounds as if you are in a very dark place. It was good that you talked to your wife about it, though. Let her support you and please listen to the good people on this forum when they respond to you as well.
My opinion
Most everything I have read (and believe me, I've read a lot about ALS) and most everything I have been told by some incredibly smart neuro's (including ALS specialists) have said that most of the time people with ALS don't realize they even have their twitches in the initial stages of the disease process. That means that those twitches were certainly not painful. That to me means that the painful twitches you are having is a good thing and might indicate the irritation of a nerve rather than MND.
I certainly can't sit here and tell you one way or another what you have but please focus on those things that point away from MND and not on those things that point towards it. Write them down if that is what you need to do. It will help you get through these next two weeks until your appointment. Remember that a symptom there and a symptom here doesn't make a diagnosis of anything. All symptoms must line-up for a diagnosis.
Cheers.
It sure sounds as if you are in a very dark place. It was good that you talked to your wife about it, though. Let her support you and please listen to the good people on this forum when they respond to you as well.
My opinion
Most everything I have read (and believe me, I've read a lot about ALS) and most everything I have been told by some incredibly smart neuro's (including ALS specialists) have said that most of the time people with ALS don't realize they even have their twitches in the initial stages of the disease process. That means that those twitches were certainly not painful. That to me means that the painful twitches you are having is a good thing and might indicate the irritation of a nerve rather than MND.
I certainly can't sit here and tell you one way or another what you have but please focus on those things that point away from MND and not on those things that point towards it. Write them down if that is what you need to do. It will help you get through these next two weeks until your appointment. Remember that a symptom there and a symptom here doesn't make a diagnosis of anything. All symptoms must line-up for a diagnosis.
Cheers.
brendapals
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Chris,
I'm terribly sorry if I offended you, or hurt your feelings in any way. I did not intend for that to happen. I just want you to stop focusing on these "twitches", I understand they are painful, but it is not healthy to focus on nothing but them.
I pray you have a peaceful Sunday and rest as much as possible,
Once again, I'm sorry,
brenda
I'm terribly sorry if I offended you, or hurt your feelings in any way. I did not intend for that to happen. I just want you to stop focusing on these "twitches", I understand they are painful, but it is not healthy to focus on nothing but them.
I pray you have a peaceful Sunday and rest as much as possible,
Once again, I'm sorry,
brenda
chris_uk
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You have not upset me in anyway shape or form, i appreciate your advice and welcome it....How can i be offended my people wanting to help me? i appreciate all that people do on here. Your all so very kind
Chris
Chris
clewbcg
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Chris, I watched your video, and your twitches (or fasciculations) could be anything. My husband's ALS twitches do look like that, but when he first started having them the doctors told him that it could be alot of things. You have to have some other tests before you start to worry. Try to relax until your appointment. You are not weak, my husband and I cried alot while waiting for his neuro appointment. Hang in there. I forgot to tell you that my husband couldn't even feel the twitches when they started and they were definitely not painful.
clewbcg
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I'm guessing that everyone on this site has seen these twitches. They were the first symptoms that sent my husband to a neuro, because his regular doctor noticed them when he was in for something else. My hubby PALS didn't even know that he was twitching. His started in his arms, shoulders and back. I repeat though that no diagnosis of ALS can be made from just twitching. You will need many more tests to rule out other problems (none of which are as scary as ALS). We're here for you on this forum. Everyone is great about answering questions, and boy do we understand about being afraid.
Zaphoon
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Chris,
Take it from one of the more accomplished "twithcers" on this site; change of focus really helps! There are 2 cats in my house and I'm not a "cat" person. Much prefer a good canine, myself. I don't like twitching any more than I like cats but I deal with them, usually by ignoring them. (I don't really feel them much anyway.)
I would suggest ignoring them until a neuro gives you something to be alarmed about. I'd rather think of food, a good chocolate bar, cup of espresso or a friendly canine over twitches any day.
Zaphoon
Take it from one of the more accomplished "twithcers" on this site; change of focus really helps! There are 2 cats in my house and I'm not a "cat" person. Much prefer a good canine, myself. I don't like twitching any more than I like cats but I deal with them, usually by ignoring them. (I don't really feel them much anyway.)
I would suggest ignoring them until a neuro gives you something to be alarmed about. I'd rather think of food, a good chocolate bar, cup of espresso or a friendly canine over twitches any day.
Zaphoon
BethU
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Hi Chris, this is probably a dumb question because I'm sure you're way ahead of me, but if the twitches are painful, are you taking anything for the pain?
If you could reduce the pain, I think it would be easier for you to ignore them. I know it's impossible for me to ignore any kind of pain ... when something hurts, that gets my complete attention!
If OTC pills don't help, maybe call your doctor and get some pain relief now.
Hang in there.
If you could reduce the pain, I think it would be easier for you to ignore them. I know it's impossible for me to ignore any kind of pain ... when something hurts, that gets my complete attention!
If OTC pills don't help, maybe call your doctor and get some pain relief now.
Hang in there.
stacey
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looking for alot of help, dont have any idea where to start my husband is 46
Im Not Sure If I Am Doing This Right But,im Lost For Words My Husband Went To The Doctor 5 Weeks Ago And They Told Is Als After One Emg And One Doctor Visit,we Are Destroyed
hi Chris,
I Sent You A Pm As Well . . .
Just Watched Your Leg On U-tube. Whoa. Very Disturbing, And Yes Very Familiar. I Laid In Bed One Night And Watched In Utter Horror As I Had "big Bangers" One After Another That Believe It Or Not Not Were So Strong My Whole Calf Was Moving Back And Forth. It Was Like A Scary Movie. It Stopped After A Few Minutes And Then My Feet Started Bubbling. I Have To Admit That I Too Have Yelled At Them (as Dumb As That Now Sounds..."just Stop!" You"re Driving Me Crazy!" I Guess The Day They Talk Back I'll Know It's Time For A Jacket That Only Buckles In The Back) I've Also Tried Hitting Them, But Nothing Stops It.
I Feel Great Empathy For You, You Know That. And Cindy And The Rest Of Folks Are Right (although It Can Be Easier Said Than Done, I Know) Try Not To Focus On Them So Very Much.....as In Filming Your Leg And Putting It On Youtube . . .take A Bit Of Comfort In That What You're Seeing And Experiencing Are Indeed "normal" (did I Just Say Normal? Lol) Twitches And Yours Look Similar To What I'm Having Too.
Your Smiley Was Crying, I Hope You're Not Really Crying Right Now. Try As Much As You Can To Take Your Mind Off Of It, I Find Mine Seem To Stop (or At Least I Can't Feel Them) When I'm Moving Around. Go For A Walk, Talk On The Phone To A Friend, Get Engrossed In A Good Movie Or Book, Something.
It's Late Here So Me And My Twiches Are Off To Bed
((((suzann)))))
Im Not Sure If I Am Doing This Right But,im Lost For Words My Husband Went To The Doctor 5 Weeks Ago And They Told Is Als After One Emg And One Doctor Visit,we Are Destroyed
broodjeaapspeciaal
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BethU
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Stacey ... I am so sorry that your husband has been given this diagnosis ! I can't believe anyone getting such a quick diagnosed on this. Please get a second opinion!
I don't know your husband's medical history, but there are many, many, MANY other diseases that have to be ruled out before they conclude someone has ALS.
It may be that the doctor was right, but ... you need a second opinion. It's probably impossible for you to feel hopeful at this point, I know, but this doctor may be wrong. At least allow that possibility in your mind, and take steps to find another opinion.
I will be praying for you and your husband, and hoping for the best. I'm outraged that he slapped that diagnosis on your husband after a single visit.
Hang in there.
I don't know your husband's medical history, but there are many, many, MANY other diseases that have to be ruled out before they conclude someone has ALS.
It may be that the doctor was right, but ... you need a second opinion. It's probably impossible for you to feel hopeful at this point, I know, but this doctor may be wrong. At least allow that possibility in your mind, and take steps to find another opinion.
I will be praying for you and your husband, and hoping for the best. I'm outraged that he slapped that diagnosis on your husband after a single visit.
Hang in there.
broodjeaapspeciaal
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Exacly! keep hoping! I just feel that after reading so many great news about the ALS research and its advancement that a good treatment/ cure is around the corner. I hope it wont take more then 10 years !
clewbcg
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Stacey,
Did a neuro with ALS experience diagnosed your husband? We went to three different doctors and 2 out of 3 said ALS. The one who said no was an internationally known expert and we rejoiced after his decision. However, he turned out to be the 1 that was wrong. In our case, the other neuros said they "thought" it was ALS, but even after all the tests, they said that they could only be sure when a few months had gone by to see what weakness developed. Also, they first ran alot of tests to rule out other things. This was just a horrible time for us, and I wish you all the best. For sure-see another neuro. The doctor at our ALS clinic was the most convinced after even just one emg, but even he said lets wait and see. Wishing you all the best. No one can understand off this site what you are going through. You really have to take it one day at a time or you'll go crazy.
Did a neuro with ALS experience diagnosed your husband? We went to three different doctors and 2 out of 3 said ALS. The one who said no was an internationally known expert and we rejoiced after his decision. However, he turned out to be the 1 that was wrong. In our case, the other neuros said they "thought" it was ALS, but even after all the tests, they said that they could only be sure when a few months had gone by to see what weakness developed. Also, they first ran alot of tests to rule out other things. This was just a horrible time for us, and I wish you all the best. For sure-see another neuro. The doctor at our ALS clinic was the most convinced after even just one emg, but even he said lets wait and see. Wishing you all the best. No one can understand off this site what you are going through. You really have to take it one day at a time or you'll go crazy.
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