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Unknown

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Hi,


Im a 38 y/old Female. Five weeks ago, I woke up out of the blue with widespread muscle pain. First stop to PCP. He did all bloodwk, ANA, RF, CPK, VITAMINS, PARVO, VIRUSES, TRuly Everything. All normal.

Two weeks after this, I began having widespread muscle twitching. (Most are felt) Only few are seen. My Muscles feel cramped, sore stiff and cramped. These symptoms have been continuous & refuses to go away since 5 weeks, now. The intensity changes but never fully goes away.

I've seen 2 nueros who both seem to think (Well not much) YET of my brisk knee reflexes and absentee Babinski reflex (Which I know I had at some point).

I had an MRI Of Brain
MRI Of C-Spine
An EMG Upper & Lower

All were normal & One neuro practically threw me out saying "ya see, the EMG is normal so are you satified now.......Its not ALS"

Thats when I sought out a 2nd oppinion. The next neuro says It doesnt Appear to be ALS & Come back..........He'll monitor me & repeat the EMG. He admits I do have symptoms but says, sometimes the knees are just brisk............He'd be more concerned if the toes curled up (Absent babinski doesnt worry him) He tells me be confident that theres no real weekness but keeps saying, "lets see". We will keep a watch out for it.
Im soooo FUSTRATED! Im SOOO SCARED!

The reflexes are whats making me think that the Dr is just waiting for this to manifest. Doesnt the reflex (Brisk Knee) & Absent Babinski represent UMD & LMD?

.
I have an 18 y/old, a 4 y/old & NO FAMILY! I've spent 4 weeks in & out of dr's offices to be told, "Im not sure what it is".


I just cant shake the fact that I have upper & Lower Motor Effects.

I even saw a Rhematologist who feels this cant be FibromyalgiaFibromyalgia because I only had 1 trigger point. She said its more likely to be neurological & the symptoms just haven't manifested completely.

I can't continue each day with thoughts that I will probably deteriate. Im soo VERY lost! :-(((
 

Zaphoon

Extremely helpful member
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DX UMND/PLS
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Unknown,

Take heart! The EMG is a very, very sensistive tool and would have picked up any lower motor involvement before, during or after any symptoms manifest.

Neurologist are professionals that have studied long and hard to get where they are. If they sometimes seem a bit edgey, its because they do not like being doubted or second guessed by we lay folk who have no neurological training.

If the neurologists said you don't have ALS, please believe him/her and please stop waiting for something else to manifest. You may have some other maladay but at this point, it is not ALS (according to your neuro).

Zaphoon
 

northerngirl

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Lost a loved one
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Dear Unknown,

Nothing will make you more sick and tired, then being sick and tired! The frustrating feeling of not knowing what the heck is going on will drive you totally nuts. But..... If your EMG's are good and the highly skilled, highly paid professional semi-drivers, opps I mean neurologist is telling you you don't have ALS , you don't. If they start telling you, you have some stuff here that might look like it could be ALS then , and only then start worrying that you might have ALS. The stress you will go thru if you don't, will eat you up and spit you out! I know been there done that. Yes you sound like you feel like crap but it does not sound life threatening. Try and stay positive.
 
U

Unknown

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Hi Zaphoon & Northern girl,

Thx so much for replying. The 2nd Dr seems unsure but Im not sure if hes questioning himself because I keep questioning. (If that makes sense).

He feels I do have symptoms AND this is what worries me. He wants to wait & see. Does he know something........Im thinking, hes probably concerned about the reflexes. After all, desn't this represent PMD or LMD?

He says, he doesnt think I have it "now" but cant gaurentee I wont have it 6 mo's or 1 year from now?
Why cant the EMG be enough?

He said he can always send me to an ALS specialist. What would a specialist have to do differently to diagnose me? Ya know what I mean?

I cant thank you enough for taking time to reply to me............My life feels like its been pulled out under my feet & I cant concentrate on anything! :cry:
 

dsiple

Active member
Joined
Nov 14, 2008
Messages
80
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PALS
Diagnosis
12/2003
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US
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pa
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Punxsutawney
the best advice I can give is, keep your head up take care of your family, just try to keep busy and not think about it. here is a quote I read just about everyday, it helps me to realize that we all have a reason for being here, regardless of whatever problems we may be experiencing:

It is not the critic who counts;
not the man who points out how the strong man stumbles,
or where the doer of deeds could have done them better.
The credit belongs to the man who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs,
comes up short again and again,
because there is no effort without error and shortcoming; deeds;
who knows the great enthusiasms,
but who does actually strive to do the
the great devotions; who spends himself in a worthy cause;
who at the best knows in the end
the triumph of high achievement,
and who at the worst, if he fails,
at least fails while daring greatly,
so that his place shall never be with those
cold and timid souls
who neither know victory nor defeat.
-Theodore Roosevelt


Duane
diagnosed 5 yrs ago and refuse to give up!
 

planningguy

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556
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Wyoming
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Sheridan
Unknown,

I think the rapid onset and global symptoms point away from ALS, but I'm not a doctor, and you have to be able to trust them or find one that works for you.

You talk about being worried about UMN symptoms. Is this something one of your neuros has mentioned, or based on things you've read? If its something you've read then I would let it go and try to relax.

Doctors use "wait and see" for a number of reasons. One is that there are thousands upon thousands of possibilities for causes of symptoms. Sometimes waiting does allow new things to emerge that helps the Dr. make a diagnosed.

A more common reason is that there are a lot of relatively benign (in the grand scheme of things) situations which never get any worse, or resolve themselves over time. Many medications, treatments, and therapies carry mild to moderate side effects. As far as the human body is concerned, it seems the more it can be left to its own devices the better.

In regard to reflexes, please keep in mind that they represent a range, rather than a "positive" or "negative." Some people naturally have reflexes that are a little brisk, or not as prominent. My brother, for example, has had virtually no gag reflex for as long as I can remember (It has allowed him to win some very interesting competitions.). Reduced gag reflex taken as part of a number of symptoms may have some significance, but on its own doesn't necessarily mean anything.

You say you have an absent Babinski's sign. Do you mean your toes do nothing when your foot is stroked? A positive Babinski's sign (as a clinical finding of UMN damage) occurs when your toes spread upward when the foot is stroked, like a newborn infant. Some people get concerned if their toes do not curl downward, but unless they point upward there isn't evidence of UMN involvement.

We can be here to support and to listen, but none of us can turn your symptoms into a clear diagnosed. I know waiting can be stressful and tiring, but if there isn't enough for a dr. to go on you're only going to work yourself into a state stressing it.

Take care,

Robert
 

awieleba

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oakland twp
HI MOm

hang in there. Try not to worry about brisk knee reflexes, I have them as well. It is so bad sometimes that if I am talking and slap my hand on my leg, my foot just shoots up! My reflexes have improved (or become less brisk) as of late. MY als specialist was not concerned about them as they were the same in both. I think they worry when all are not and one limb is hyper only? It was so bad before I saw a nuero that if layed on my stomach that my thighs felt funny, and that has gone away. My toes curled down in May but last week did do much of anything either.

It is hard not to worry and read into what the docters are saying, I am guilty as well. I know how upsetting and hard it is when seemingly overnight your body starts twitching and cramping...it is strange. I would not worry about this 2nd doctor. Give this time and then if you need further testing go to an als clinic. I did, after my local neuro, who did an emg told me no als and gave me a hand full of pills. (and had never seen an als case)I went to an als clinic at my university hosp. Mind you I still have no diagnosed and I have had a clean emg in May and will get anther in Jan.

Take care and hug those kids.......
 
U

Unknown

Guest
I cant believe how you all have taken the time, EXTENSTIVELY writting back to me......A mere stranger! Im crying because each of you are going through your own tribulations & yet, here I find these words of advice & encouragement on my screen. All I can say is Thank you. Two simple words, yes.............But, Thank You.

Aweilbla: When I slap my hand on my thigh, just as a matter of fact, in a conversation, my leg jumps too! I have to admit, hearing you say that has been the only thing that made me crack a smile in weeks!


I do have it in both legs, so thx for that lil bit of hopeful info. If I recall, they have always been that way. The babinski, well, nothing happens, :-? I remember a time my toes would curl?

You say you went to an ALS clinic. May I ask what happened there and if you felt it was worth the trip. (YOU still have no diagnosed?) Im not sure why but when I click on a members name to View profile, ect.......It tells me I dont have access to that feature, so I dont know how to get info on anyone. Pardon me if Im asking something that I can probably click a button to view.

Where do you stand now?
Thx, from my heart, TY!



PLANNINGGUY: Gosh, Ty too! A friend of mine just told me the same thing. I need to trust the Dr! If he says, we'll wait & see, just wait & see but I look into my 4 year olds face & ALL I think about is who'll be there for him when Im not. Imagine!?

As for UMD or LMD, I did read it. It was about the reflexes. When I questioned my Dr, he gave me the answers that I wrote earlier but nothing definate. My toes do nothing, not up nor down but they used to.

I cant understand, does an EMG mean anything?

May I ask you as well, your symptoms?
I feel a bit better after reading your posts tonight. In my heart, I thank all of you.

DSIPLE: What a perfect saying. I will read that as a reminder often! Thx for sharing! You were diagnosed'ed five years ago & I see your spirit is uplifting! Bless you! Its the attitude that'll keep you going! Something I envy & know I could never have, How did you get diagnosed'ed?
Thx again..............Such a big world, yet so small.
 

hopingforcure

Very helpful member
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Please be aware that brisk knee reflexes in the doctor's office are not a big deal.el I will tell you that brisk reflexes in a weak limb is more concerning. I have pathologically brisk reflexes and that is a problem, they are in all deep tendon's, and I have sustained clonus and jaw jerk, now that is MND, reflexes and that in weak muscles is what is concerning. I understand all of those who are nervous, but please understand you are all only half informed, not saying that to be mean at all, just saying it has taken me years of tireless research to get a good handle on the disease, I am not a doctor just a crazy research fanatic, OCD according to my hubby.. Hope my OCD can help.
 

broodjeaapspeciaal

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Learn about ALS
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As far as i know, brisk reflexes are considered as normal if they are the same in both limbs. Its considered abnormal if only ( lets say a leg ) one body part has the brisk reflex, while the other has a normal reflex, or no reflex at all.

They also look for clonus ( like they slam you with a hammer on the knee and you keep kicking). If you dont have any of that and only brisk reflexes, its usually considered normal.
 
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