No where near over this

[olly]

hi chris.
i had to go back and look at the post with your youtube video...................my,that is some serious twitching:shock:
has the neuro seen it? what do they say?
i know it is said that most people get benign twitching but seriously would bfs be that bad?
no wonder you are worried,i hope you can get more answers at your next appointment.
have you shown your gp,they may try to get your apointment moved forward.
mine has never been as bad as that,just gentle and sometimes i can not feel them.
i have some strange pulse type ones going on in the centre of my left palm at the moment that has sunk in.

 

[wright]

Chris

Given the extent of your fasics, they most certainly could have given you that "rain drop" sound. Your neuro is ethically obligated to reveal ALL information to you. Therefore, if there were fibs present, then he would have had to tell you. There is absolutely NO WAY that fibs could have been "missed" as you put it. Do you honestly think that if YOU heard those "rain drop" sounds, that HE didn't? Come on, Chris . . . you're being ridiculous here. The sounds of the EMG aren't even needed, because what is being seen on the screen is what is causing those sounds (they are in sync). You can turn-off the sound to the EMG and it won't mean a thing to the interpretation of the exam.

Olly and Chris

YES, BFS twitching can be as "bad" as what Chris is seeing. RELAX!

 

[chris_uk]

I am trying to relax Wright, but everyone who sees my twitching is amazed at how violent they are. Not sure how long i can go on like this.

chris

 

[olly]

ok,i dont know much about bfs and thought it was just normal odd twitching everywhere.
did not realise it looked so bad.
the emg stuff just goes over my head so dont know what kind of noises or visual signs are good or bad.
sorry wright and chris:razz:

 

[awieleba]

Chris~

If you had a slow nerve test, then that is a good indication that something other than als is the culprit. Maybe you should see if a new neuro? did he suggest a muscle biopsy or any other testing? Is he an ALS doc? or nuero muscular speclist? It is alot of twitching, that is why if it was als, I would think the emg would have picked some type of muscle wasting or denervation. I know it is hard, if my leg was twitching like that I would be the same as you. Have you thought about wrapping it in a ace bandage or tight knee sock to help with walking or limping? I wear tight ski socks because my calfs hurt and it helps.

The only thing that will tell is time. I felt a huge relief when I got my 2nd emg. My first was about 3 months from twitching, maybe sooner. I was afraid it was too early as well. My next one was a year later. I was sure that they would find something, they HAD to see something. Well, nope they did not and my clinical presentation was a little better as well. reflexes were less brisk and gag reflex back to normal and jaw jerk normal. It was a relief. and I felt better that it was a year later. Trust me, I have been there and down this road. I know I have something going on, but I am believing its not als. I have learned you can have some crazy muscle stuff. Twitching and limb jerking can be from irritated nerves or muscle.

Olly~

I had that pulse thing in my palm, and my palms are flatter. I just think it is a pulse even if there is no pulse point. If your thin enough, maybe you can see it? That is what I told myself. My hands are pale and I can see a blue vein running right were it was.

take care

~april

 

[awieleba]

chris

ps, during my emg, they had the machine off and on. They were only interested in the screen. The nuero turned it to me and showed me my motor unit potentials on the screen. He wasnt like 'hey, here that silence?"

 

[BethU]

Chris ... it sounds like you read about the "raindrops on a tin roof" sound before you had the EMG, and that this is what you were listening for.

But both the technician and your neurologist told you it wasn't MND. Anyways i asked the tech if he seen any signs of MND and he said no. I then got a letter from my Neuro saying he had seen the results and it showed no evidence of MND and he wanted to reassure me as firmly as he could that i did not have it.

I know there are some clueless doctors out there, but it is VERY unlikely that your neuro (plus EMG technician) would come up with a completely wrong interpretation of the test results ... while a layman (you) who is cherry-picking information from the Internet, would get it right.

I know your twitches and pain are real, and so is your anxiety, but speaking as a layman, it sounds to me like there are psychological or emotional problems going on that you are using a fear of ALS to mask. The fact that you are clinging to this fear in the face of all expert advice is strange, and there is no other explanation that I can think of for your rejecting the test results. Can't remember if you've seen a counselor or not, but I think a few sessions where you can talk this through might ease your mind.

Start being good to yourself. Get meds to help the pain if that's what it takes to give you relief there, and try to sort out the underlying causes of your anxiety and distress. You're obviously an intelligent and likeable guy. You don't have to live like this.

 

[joelc]

Chris, you have talked yourself into a dangerous worrying position? You can talk yourself out of it! You will not believe your doctor and you come here and will not believe us either. What do you want us to say? Do you want us to tell you that you definitely have ALS and will be dead in 6 months? Please get a grip on your emotions and relax. All this worrying will not help and does not add a day onto your life so don't waste that energy, save it for something more enjoyable.

 

[chris_uk]

thanks for all your advice, can stress cause this amount of twitching? i admit that i am stressed about it totally

Chris

 

[joelc]

It certainly contributes to it.

 

[awieleba]

I would not worry about the twitching, alone. You may twitch for a long time, years maybe. Alot of people do, that dont have MND. You will have wasted time with worry. I wasted time with worry. I just MADE up my mind to assume that I may not know why Ihave the things I have going on but I am still going. Please, dont worry untill you have to. I had a hard time believing my docs, becuase I wasnt offered any other diagnosed. But, untill someone tells me I have something or it, then I dont. Same with you, you dont have this. It is not showing on any test.
HOw are your clinicals? Do you have any umn? babinski, hoffmans, hyper reflexes, clonus, etc?

april

 

[chris_uk]

i had a normal clinical and normal reflexes, must be a good sign

Chris

 

[olly]

april.
guess what :shock:i googled it:shock:
there are no major arteries where the twitching is,they run either side.
i have been getting cramp in the left hand and pain in the finger joints for a few months now,on inspection i noticed the twitching pulse and the middle of the palm has sunk in.
to be honest,having had pls 10yrs next month i am no longer suprised what my body gets up to and just let it get on with it.
life is short enough for stressing,i can still walk(to some degree) breathe and still managing to eat so lifes still good.
hope things are ok with you:grin:

 

[maryroseuk]

Hi chris, i havent posted here for AGES, but my, my u do sound like me a while back, i had twitching just like your video almost identical since my son was born 2 & half yrs ago, like you was i was conviced i had als, made myself phisically sick with worry, spent sooo much money on private neuros only the best, as i was convinced the others would miss it, i had 4 emgs in total, numerous phyicals... they all said the same, im sorry it must be hard you do have very severe bfs but that is all you have.....i didnt believe them until i saw a proffesor of neurology, yes thats how high i went... when i finally walked out of his room being given the all clear yet again i finally got it.. i was fine i had bfs annoying yes, even painful yes, i even had severe tounge twitching also but i didnt have als... once i finally acepted it and truley believed it do u know what my twitching totally calmed right down i had a year and half before i accepted the truth, i still get it yes, everyday but i dont notice it as its just not important anymore, you will get here chris believe me, you will get thru the fear.

im here if you need to talk

 

[suzannj]

Hey -
I've been away for a bit in the hospital. If anyone doesn't know this little fact: Kidney Stones hurt like a mother f-er! Never had one in my entire life, was 100% fine, woke up out of a sound sleep in excrutiating pain. Ambulence ride to the hospital, morphine that only cut the pain for maybe an hour at time, the stone was in a bad place and needed to be removed surgically. UNREAL. Anyway . . .

In any event, I can't be on for long - still pretty uncomfortable, but I read your post Chris and had to give you my two cents: Which will start with this very intelluctual statement: WTF? Here is your quote: "Dont want to take anything for it because then i feel like i will be masking it and living a lie." Here's an analogy that is very near and dear to my heart right now: "NO nurse, please don't give me that morphine even though I'm about to pass out with pain, because you see THAT would be masking my kidney stone and I'd just be living a lie". Sorry. Don't get it. Unless you have a religious belief against meds - TAKE SOME. Why would you be uncomfortable if you don't have to? I could kick this horse for many, many more sentences but please take my advice: Go to the nearest doctor. Get that doctor to Botox that friggin' leg muscle, take as much Motrin (ibuprofin) every day for discomfort as you need, get on some Lexapro, and LIVE YOUR LIFE DAMN IT!

One of my best friends sent me this e-mail awhile ago. I printed it and keep it next to my computer and read it out loud when I'm having a bad day. Here's an excerpt, I hope it helps you too: "Stop focusing on the negative and start taking back your life. You are making all the wrong choices right now and will end up with depression. You really NEED to start on an anitdepressant. You have a choice between wellness and drowning in this black hole. Remember that! Get on some meds for you and your family's sake and believe your doctors. You have a long life left . . . start LIVING it!" (Yes, good friends will kick your a$$ when you need it )

Beth: Been meaning to ask you for a long time . . .what is your new avatar? It looks to me like a swan with a blue ribbon tied around it's beak! I've spent more than a few minutes looking at it from different angles and can't figure it out! LOL

Wright: You're a stone cold fox!

Lydia: Hope you're well . . .it's supposed to be sunny AND warm this weekend! Hooray!

Okay, nap time -
Suzann