Old 03-12-2010, 11:16 AM #1 (permalink)
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Default Please dont yell at me........

As most of you know, I CANT move my pinky toe up or down. It just basically died. When I lift my toes, it doesnt come up like my other foot anymore. Its drooped & useless.

I went to an als Dr who clinically noted the weekness but said the rest of the foot wasnt week.

Brisk knee reflexes but they are both brisk, didnt seem concerned.

He did an emg/nvc (Only using 3 needles) One in the pinky toe, one in the calf & one in the thigh. The NVC test took about 12 minutes & the needle test 10 minutes.
He said everything was good & said no als.

Please understand, I am a single mother with NO family. (I lost my mom, dad & brother tragically a few years ago) so its just me.

I sought out another opinion from a different als dr. He seemed so complexed about why the pinky doesnt move. While he said, its "probably" (unlikely) not als, he said come back in 3 months for a "thorough" emg. I asked why 3 mo's & he said sometimes its too soon to be picked up?

He did say that he has never seen als start in a pinky but anything is possible. He worried me because he seemed flip floppy, saying "its probably not als but then again that pinky isnt moving". (This kind of flip flop talk). Ya know, like, dont worry but lets see if it progresses & if theres a change on the next emg.

The first als Dr seemed more confident............

I just needed to write.

Im trying to convince myself that the emg would've picked it up (being it is week) But I dont even know if weekness is a LMN that would be picked up on emg?

Then Im thinking the Dr only used 3 needles.

Then I say well he probably didnt have a reason to use more..........

I keep thinking people with footdrop HAD week toes but just didnt notice it till the foot dropped.

Ok, so, as you can see, Im in need of your thoughts.

Thx
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Old 03-12-2010, 12:16 PM #2 (permalink)
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Default Re: Please dont yell at me........

Go back to the doctor in 3 months, until then STAY OFF THE INTERNET and concentrate on raising you sweet children. As a single mother you have plenty to worry about without thinking about something that most likely won't happen and you can't do anything about right now if it does. In the very very unlikely event that somewhere, months from now, you are extremely unfortunate enough to get as diagnosed of ALS this forum will be here for you.
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Old 03-12-2010, 12:22 PM #3 (permalink)
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Default Re: Please dont yell at me........

I have noticed that mothers with young children are among the more common groups who come on here worried that they have ALS when they don't have it. Probably it has to do with the great stress and hard work involved with childraising. Also no doubt there is the natural worry that something might happen to you and how hard that would be on your children whom you love so much. These factors seem to add up in some people to an unhealthy focus on a worst case scenario like ALS.

I know it is hard but you have to try to put it out of your mind. Don't worry about something very rare and very bad unless you have really strong evidence to do so.
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Old 03-12-2010, 02:13 PM #4 (permalink)
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Default Re: Please dont yell at me........

Look, the reason they want you to come back in 3 months is because ALS starts very subtly, but ultimately, it's anything but. So it's almost pointless to play a guessing game early on, because if it's ALS, there won't be any guesswork necessary. It won't just be a weak toe, it will be a weak foot, weak ankle, weak knee, weak leg. It will be an EMG that shows denervation, reinervation, sharp waves, etc. It will be progression to other limbs and symptoms affecting your upper neurons. If it is ALS, then it will make itself known.

But right now all you have is a weak toe and a clean EMG. You're also fairly young, correct? The chances of that being ALS are EXTREMELY unlikely. Different doctors have different personalities... to one doc "extremely unlikely" means they can say "it's not ALS." To another doc "extremely unlikely" means that small possibility is worth checking up on in a few months, even if it's just to make you feel better.

I know it's stressful to be in limbo. If you think there's 95% chance that you don't have ALS, even that 5% chance can haunt you. All you can do is put faith in that 95% and be comforted that time will tell. The more time that passes where you don't have progressive weakness and atrophy, the better.

Check back with the docs in 3 months. In the meantime, think about how unlikely it is that you have ALS and spend your time with your children NOT the internet. This place is for advice and impressions, not final answers. No one can tell you with 100% certainty that it is or isn't ALS here, but everyone is saying it sure doesn't sound like it. Be comforted by that, follow up in a few months, and then move on.
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Old 03-12-2010, 05:30 PM #5 (permalink)
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Default Re: Please dont yell at me........

Oh baby! I have seen my Minister fall to complete paralyzation just from stress. She had two children, a husband that was her third and two congregations that loved her to pieces. Hang in there. ALS diagnosis is little more than a series of elimination of other possibilities. You really need lots of tests including electric shock, Tom even suffered several "jugs of juice" where they filled him with blood products. Such a waste of time now, but at the time they were the strings of hope we clung to. In the mean time life goes on and you do NOT want to miss one single moment. Live today like tomorrow will be borrowed. Love your kids to the max. Perform your best and live IN THE MOMENT no matter what it brings. This is all any of us ever have and what we should treasure as the real GIFT of life.
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Old 03-13-2010, 10:05 AM #6 (permalink)
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Default Re: Please dont yell at me........

Thank you all, I know you mean well.......I know I have no choice but to wait but in the meantime, Im still confused,

Wouldn't the Emg have showed something? (Why check again in 3 mo's)?

Is this sort of weekness LMN or UMN?

When a person has foot drop, does it affect the toes first?


Oh BTW, Andy, Im 39/F
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Old 03-13-2010, 11:01 AM #7 (permalink)
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Default Re: Please dont yell at me........

Quote:
Originally Posted by rayray123 View Post
Thank you all, I know you mean well.......I know I have no choice but to wait but in the meantime, Im still confused,

Wouldn't the Emg have showed something? (Why check again in 3 mo's)?

Is this sort of weekness LMN or UMN?

When a person has foot drop, does it affect the toes first?


Oh BTW, Andy, Im 39/F

They will want to see if there is any change in 3 months. Don't worry yourself about als. The chance of you having it is really low. From what I could tell from the emg is. It amplifies the electrical current from your brain to me muscle. If you have dieing neurons, it sounds like a rough intermittent sound. Good signal is a fine smooth sound. When they stuck my effected area. I could easily tell the difference in the sound. You have a drop toe, but the signal from the brain is still smooth. IMHO.
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Old 03-13-2010, 11:03 AM #8 (permalink)
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Default Re: Please dont yell at me........

There are other things out there that involve a foot drop. While Tom was going through the tests and time warned of ALS, one of our neighbours was also going through tests -- had foot drop -- and he was diagnosed with something completely different even though he saw similarities in what was happening to Tom and what was happening to him. I can't remember the name of it but it was like a Man's name (Not Lou Gherig) Also an uncommon ailment and involving nerves. What I am trying to say is there are so many possibilities and not all life threatening that you must not jump to conclusions.

The internet warning from AndyDJX is a valid one, too much information is available and you can make yourself sick by thinking too much. Time is a real pain in the ass but also a necessary friend. Time allows things to manifest and become more clear. This isn't like a cancer where rushing can prevent an untimely death. MND is slower, deliberate. ALS is inescapable. It's not a ride of choice but once in the seat you have to stay the course.

Hang on to hope.
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Old 03-19-2010, 01:39 PM #9 (permalink)
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Default Re: Please dont yell at me........

Hi ray ray! I am trying find out the same thing! If it can turn into foot drop, then do we need ANOTHA emg?
Can you tell me what happened? I had a quick emg (like you) Does IT RULE OUT ALS?

Why has your dr told u to come backi for anotha emg? Do i have to have anotha? Does anyone know?!

Kimberly



Quote:
Originally Posted by rayray123 View Post
Thank you all, I know you mean well.......I know I have no choice but to wait but in the meantime, Im still confused,

Wouldn't the Emg have showed something? (Why check again in 3 mo's)?

Is this sort of weekness LMN or UMN?

When a person has foot drop, does it affect the toes first?


Oh BTW, Andy, Im 39/F
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Old 03-19-2010, 02:57 PM #10 (permalink)
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Default Re: Please dont yell at me........

Kimberly-- go to rayray's profile and look at the questions she posted, and then look at the responses. Everything you are asking has been asked, and it has been answered as well. This entire thing played out earlier this week and Rayray left the board because she doesn't have ALS and there's no reason at this point to think that she does. You two are in the same boat...a single weak toe and a clean EMG.
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Old 05-09-2010, 01:44 AM #11 (permalink)
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Default Re: Please dont yell at me........

never mind posted in error

Last edited by sadiemae : 05-09-2010 at 02:08 AM
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