Old 06-08-2011, 09:29 AM #16 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

Richard,

I think the thing that many that come here don't get is just what you said. How much time it takes PALS to respond. I'm glad you posted it--and I certainly vote for it to be a sticky.

I used to type 75wpm. Now, not nearly so much. With my next to useless hands, I often have to go back and correct things and make it look readable. I'm sure you and trfogey spend a lot more time than I do--as I can use most of my right hand and some of my left.

trfogey is the champ here--hands down--in the time he takes to break up their posts and answer point by point. I don't know how he does it--it's too frustrating for me to try most of the time, and I don't like my loss of ability, so it mostly frustrates me to see how bad I am compared to even a few months ago. Hitting the ctrl and c and p (the copy and paste keys) is a move I can't do anymore without several attempts. I can't control the fingers well enough. I don't know how much effort it takes trfogey, but I'm sure it's more than my piddly hassles to respond.

I posted in one of these other threads about how some of the PALS here were responding with eyes one letter at a time--but I don't think the original poster really cared any more than this one will.

Perhaps, as trfogey said, someone down the road will read it and think a minute before asking a questions and summarily blowing off the answers.

It's sad really--because so many could benefit from the experience of the PALS here--and don't- either because the PALS are just sick of the BS and don't read at all--or the original poster doesn't bother to listen to what they've been told--that might have taken someone half an hour to pump out to them.

I think something in the sticky explaining just what you PALS have to go through just to answer would be an excellent idea.
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Old 06-08-2011, 09:56 AM #17 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

Off to moderation again. It took me about 20 minutes per post--because my stupid hands don't go where I tell them to go and I have an obsessive need to have my posts be legible.

My fingers hit spaces they aren't supposed to hit--my dead fingers have weight and mis-type letters my dumb thumbs hit the space bar or the laptop touchpad which opens a zillion windows on its own. Mostly--it's just frustrating. So, I reply to a few and go drink a diet coke to get over my own frustrations at my next to useless hands

I also think it's important to add here--something Zaphoon says so well---it's NOT ALS until it simply can't be ANYTHING ELSE.

I have 90% dead left hand and the right is quickly failing, too. I absolutely can NOT use my dominant hand for things like eating, brushing my teeth or hair. It's gone--never to come back. I have spastic legs--hyper-reflexes and a few dozen other assorted symptoms--both UMN and LMN signs per a very respected ALS physician. What I do NOT have is a diagnosis of ALS. Why? BECAUSE IT CAN ONLY BE ALS WHEN IT CAN NOT BE ANYTHING ELSE.

"What other thing could it be? My God, those symptoms have to mean ALS." I can read your thoughts. My answer to that is:

No, it could be any number of things. CIDP, Multiple Sclerosis, Primary Lateral Sclerosis, Lyme Disease, and the list goes on. But note--even with a marked, documented and painfully obvious dying hands--it does NOT MEAN I HAVE ALS---not until all the other causes have been ruled out.

But I read that twitches mean ALS

By the time you twitch, the muscle damage is obvious--because you can't use that part anymore like you had been able to.

But I'm weak. I get very tired muscles when I do this, this or this

You're confusing 'feeling weak' with BEING weak. When something is weak in ALS--it means you have a loss of function. It's not a feeling. It's a reality. It's the foot that drops and makes you fall or trip. It's the hand that doesn't work and let you hold your tooth brush or your hair spray can. it's speech that's slurred to the point that others notice it.

I've had these symptoms for years....

No need to read further. If it was ALS--you'd either be dead or so seriously disabled there would be no doubt.

I've done all the strength exercises and I....

Stop doing them! Repeated strength testing is going to drive YOU nuts, and fatigue your muscles.

My EMG was clean, but I heard it can be done too early

Just wrong. If it's clean--there is no ALS. In ALS, the EMG would be 'dirty' long before you noticed whatever prompted the doctor to dot he EMG if it were ALS. Read posts by WRIGHT.

I've seen ten doctors and...

Stick with one good internist and let them refer you if needed. Doctor shopping lets no doctor get a clear picture.

I feel so bad for you all here that are dealing with this...

Great! Hit the "Donate to ALS Forum" button. Promote ALS awareness. When you're cleared of ALS--praise the Good Lord you'd dodged a deadly bullet and remember those here WITH ALS that have not.

A post I just read with 20 YEARS of obsessing on ALS just set me off and led to this little epic post. Seriously, people. With all due respect to your concerns---get a grip. READ THOSE STICKIES.

Last edited by notme : 06-08-2011 at 11:23 AM Reason: additions, corrections and stupid, inoperative finger mistakes.
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Old 06-08-2011, 10:40 AM #18 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

I know you didn't ask me. My responses are short an to the point, I type with one finger and about every other letter is wrong so I have to delete and re type.
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Old 06-08-2011, 11:16 AM #19 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

Well, I usd 2 typ 120 WPM wjhen i worked @ tjhe collgfe. & my 1st jon offre was as a proofredaer W/ NSA; cam't beliece that in less thjan 1 yr I hajce gome from typing fast 2 tyuping thjis way. I giuess I wuoldm't jhace a job amynore if I hjad takem it!
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Old 06-08-2011, 11:47 AM #20 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

Richard, I use Dasher with a headmouse for most of my typing (minor corrections with an onscreen keyboard). The long responses I give here usually take about an hour to do; shorter responses are anywhere from 10 to 30 minutes. Compared to my old 75 wpm typing speed, I'm a snail now, but you gotta do what you gotta do.
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Old 06-08-2011, 11:06 PM #21 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

thanks everyone for taken your precious time out to respond to me.
i am just very very worrid of my symtoms since it has been such a short period of time and symtoms i blew off startd back in end of 2010
i also have drop foot i just never knew what it was called or why i tripped more lately i blew that off i never have even mentiond this to my neuro,
i will trip ALL the time in store around the house, sometime twist my ankle ,but i always catch myself today though was the biggie i almost didnt and it was concreate, i loose balace ALL THE TIME, worst past month
No this does NOT mean als i do relieze this and i will get my EMG soon
WHAT i do know is its NOT ms, bc my DR statd if it was indeed ms with all mys symtoms iam haveing it would show Leisons, or LP would have showd something and none showed ANYTHING.
i also do not have lyme, lupas, or fibro he stated
many many of you say that being under 45 is a bounus for me yes you are right but they say the same about MS, and now are calling MS the young peoples diease and ALS/MND is the leading most common motor neuron diease out there and it is now effecting out of every 1,000 people are the new stasitcs, it is now more common then MS
now that being said iam not saying i have this iam just stating new facts that are out and anyone could look the info up and most Neuros and GP i have been too are quacks, who cant normally even DX a cold, thats been my luck and MANY MANY others to the ones of you have excellent DRS.. consider lucky
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Old 06-09-2011, 12:41 AM #22 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

Quote:
Originally Posted by JESSICAROD View Post
ALS/MND is the leading most common motor neuron diease out there
ALS is a MND. MND stands for motor neuron (or neurone, for our English-speaking colleagues in other parts of the world) disease. It is more prevalent than primary lateral sclerosis (PLS), progressive muscular atrophy (PMA), progressive bulbar palsy, and pseudobulbar palsy. Tell us something we don't already know.

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Originally Posted by JESSICAROD View Post
and it is now effecting out of every 1,000 people are the new stasitcs, it is now more common then MS
Don't know where you got that statistic, but it is about 50 times higher than the numbers real ALS doctors and researchers report, assuming you meant to say 1 in every 100 people. Boy, is somebody going to be surprised.

Quote:
Originally Posted by JESSICAROD View Post
now that being said iam not saying i have this iam just stating new facts that are out and anyone could look the info up
I did look it up. The incidence rate for ALS is about 2 per 100,000 people, not 100 per 100,000 people like you are saying. Perhaps you would be so kind of to provide a reference to where you got your numbers (other than pulling them out of thin air -- or some other location)?

I'll be waiting for that reference. Should prove to be interesting reading.
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Old 06-09-2011, 01:42 AM #23 (permalink)
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Default Re: Opinons of my symtoms?. Possible als/mnd

Ok--you're willing to believe them that you don't have MS--but not that you don't have ALS? I'm really confused.

Read some more on MS. It's more common than ALS--ALS is a very rare disease. MS is more common by far. Some with MS have gone YEARS waiting for a diagnosis. They know something is wrong--but nothing is showing up in the MRIs and CSF yet. A small percentage NEVER have anything show up on MRI - EVER. The plaques seen on the scans can come and go. There are about a dozen diseases that mimic it--and your age-makes it a whole lot more likely than ALS. If it was MS, it's obviously early in the process. MRI, Lumbar Puncture, and Evokes Potentials are done to diagnose it--and they may need to be done more than once.

I'm not saying you have MS---but you're quick to agree with the doctors--why is it again that you won't believe you don't have ALS? That's a rhetorical question, no need to answer.

ALS is sporadic in 90-95% of cases. The others are inherited. Yes, you can have ALS at 25--or 16 for that matter--but it's VERY unlikely. 1 or 2 people per 100,000 people are diagnosed with it. That's RARE.

Doctors would see things in your clinical exam: hyper reflexes. absent reflexes. Loss of strength...to name a few. If nothing is showing up on their exam--they can be pretty sure that ALS isn't a concern--at least not now. You may need to wait to see if your symptoms progress in any way.

I guess I just don't get why you're ready to discount the OTHER things they say you don't have--fibro, MS--but not ALS. Makes no sense to me.

I do wish you luck. I can't answer anymore of your posts--it's too hard for me to read them with the giant blocks of text.

You seem to live in a major metro area with no lack of good doctors. Find a good Internist and let them figure your issues out.

Last edited by notme : 06-09-2011 at 02:02 AM
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