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lhagsjr

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and just need the DX. I know I have it. This sucks so bad. Im a newlywed. I dont know what to do for my wife. This time last year I got home from my honeymoon without a worry in the world. One year later I sit here with a death sentence. How can this happen at 28(actually symptoms started at 27). I stay as strong as I can for wife, mom, etc because Im "not diagnosed". Im smart enough to know you dont have muscle fasicualations all over your body combined with atrophy and not have ALS or at least a MND. The tongue also looks odd. I cannot figure out 2 things:

1.) Whenever I go to a Drs office the twitching halts.

2.) I had an EMG of the right side of my body in March and it was clean.(5 months into twitching)

What Im going through right now is hell. Horrible symptoms without a DX. So family thinks Im nuts but I feel like crap every minute of everyday. Also saw the lead neuro of the ALS clinic here at the Univeristy of PA who said, NO MND. I have my 2nd EMG at University of PA ALS Clinic on Wednesday. I guess we will see what happens. My question is, what if it is clean? Where do I go from there? Do I ignore the fasiculations and try to build muscle mass back? Im just so lost...
 

Al

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OK buddy here's the straight poop. First. Real ALS twitching doesn't stop. Especially when you go to the doctors. Real twitching is compounded by anxiety which we all get when we go to the doctors.
SO no twitches NO ALS. Clean EMG probably no ALS.
If you get another clean EMG then get on with your life. If you still think you have ALS/Mnd THEN SEEK PROFESSIONAL HELP. I don't mean another Neurologist. If you want to see twitching or atrophy come see me. I'll take you around and show you what ALS is. If you think I'm being cruel and brutal then maybe that's what a couple of people here need. You can not get a new symptom every day. It doesn't work that way. This rant is not just meant for you. Don't feel singled out but this needs to be said.
AL.
 

lhagsjr

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Al

What do you mean it doesnt stop? Like 24 hours a day? I twitch on and off EVERYDAY. How can you doubt my atrophy when you have never even seen me? If you are so offended by the posts of people without a DX, you should just take the section down? Why are you OK with people like AnnMarie? Jamie? Cindy? but no someone like me? Why because I dont post everyday? I came to this site looking for support. I guess I will come back if I get a DX, if not ill stay away...I hope you are right!
 

Al

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As I said twitching doesn't stop. It is 24 hours 7 days a week. It does Not stop when you go to the doctors. I'm trying to help you here. You are freaking out way too much. Tough love sometimes helps. We all try to be nice to everyone that is scared and worried but I thought you needed a reality check. Guess I was wrong. Sorry. I truly think and hope you are wrong and are making a mountain out of a molehill. There are others on the forum like you that are undiagnosed but they have been looking for answers for 2 years. You are convinced you are going to die after a few months of twitches and some perceived atrophy that the doctors trained in this can't see. Maybe I'm becoming jaded but I just thought you needed someone to tell you that you're too smart to be falling into the ALS hole. I've been wrong before and admit it. Hopefully this time I'm right for your sake, not mine.
AL.
 

Al

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I also went back and read all your posts and your symptoms are all over the page. I still think I'm right. Sorry for the brutality Lou but I think you're going to be fine.
AL.
 

Jamiet

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Lou,

AL is right. he's trying to help. I've been right in your shoes before and i had to be jerked around, and stragled by a few people before i could get my head screwed back on and moving forward....and a psychologist is what helped. You need that.

I just knew...i was going to die....like the next day. I went so far, as to Drive to Houston (4 hours), without an Appt., walk into the ALS Clinic and demand to see the specalist. Now...that's NUTS. That's what i'm telling you.

You can read and the more you read, the more symptoms you will start having. If you do have ALS, you will notice every symptom that you never noticed and if don't, you will imagine 1/2 of the symptoms. Trust me.

So, get some help and some anti-anxiety meds. I got on Wellbutrin and it HELPED! It made me a different person, calmed me down and allowed me to focus on living, not dying. I wish i had discovered it 5 years ago. If in fact, you do have ALS....there is literally...nothing you can do about it, which is what AL is telling you in a nutshell. You've gotta understand, your speaking to people (most of them) with ALS here, so they know the ropes and have been thru exactly what you have and probably, most of the time, when they are telling you, it's not a symptom, they are right. And put yourself in there shoes.....your looking for compassion, they are for sure sick....it's hard to deal with and they are trying to "shake you" out of a bad situation. It's tough love as AL would say.

Don't get your feelings hurt, listen to what were saying. You cannot expect to get compassion from someone that has "death" staring them straight in the face. It just a fact, it's no fun.

So, in a nutshell, go to a psych, get some anxiety meds, like Zoloft, Wellbutrin, Lexapro, Cymbalta or something close. You will have to find the right one for you.

Then, go to the EMG appt. Write everthing down today, all your symptoms, a timeline and which muscles hurt / weak and twitch. When they are doing the EMG, point out which muscles you think are atrophied, if they truly are...they will see it on the EMG.

I've been to about 15 doctor appts. and although mine twitch about 20 of 24 hours...They never freaking twitch in the drs. office, or they twitch under my jeans or shirt and by the time i show them, it's over with.

And another thing, try to limit how many people you tell whats up. I've been thru the "NUTS" thing, with friends and family. Only discuss this with a few very trusted friends and family, otherwise, keep it to yourself. They will think you are nuts, we have all ben there too. And the most aggrivating thing, is once you tell about 20 people, word gets around and every tom, dick and harry will be asking you how are you feeling? it's drives me crazy now and they never stop asking once they start. Every time you see them it will be the same question....over and over and over each day...

No one is denying you are having these issues, we just think they are from something else...WE HOPE they are...trust us friend....

Regards,

Jamie
 

brooksea

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Lou,

It seems to me that you have really really really gone over the edge with this!

1. Schedule an appointment with a psychiatrist to obtain something for anxiety.

2. Take the meds and calm down.

3. Once you've become rational, concentrate your energy on your new wife.

4. Do not talk about your unknown diagnosis with anyone until you have gone to what hopefully will be your last neuro appmt, as this will only aggravate your symptoms.

5. When your appmt rolls around you should be sufficiently calm enough to have made notes to speak rationally with the neuro and get to the root of your problem:!:

You may come away with a diagnosis of BFS, which I've read can cause much concern to one that has it, since they are worried about ALS.

Hang in there.

CJ
 

vmd

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Lou:

From all that I have read, fasciculations combined with weakness is what neurologists pay close attention to. It does not appear you have objective weakness, so that is a good sign.

Al is very helpful with all of us and I always appreciate his comments because of his own personal experiences.

Speaking of fasciculations, it does appear as though there really isn't a specific pattern to look for, is there? I know that Al stated (if I remember correctly), that he experienced fasciculations in one limb or area before the fasciculations moved to another area. However, I suppose it is also possible for the fasciculations to be diffuse across the body? Also, when Al describes the fasciculations 24/7, I suppose he means that they are always present, but that they are not constant? Am I correct Al, or do the fasciculations stop for short periods of time during the day but are present 24/7? Thanks.

Another issue that is puzzling to me is how some sites state that ALS patients may not be aware of the fasciculations. I'm assuming that it is not so much they are not aware of them, but that they fail to pay attention to them. After all, one can feel the muscles twitching, especially when one is laying down and there are not other competing sensations.
 

MtPockets

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Hi lhagsjr

I just want to give you one mans opinion of what happened to me leading up to my Dx of ALS.

I had small muscle twitches begin in my feet, after months went to my calf muscles, few more months moved to my thighs. Then the twitches increased in intensity to where I could see them on the surface of my legs all the time. 24 hours a day, 7 days a week, ALL THE TIME.

When I had my first emg I could not see any muscle movement on the surface or feel any spasms, yet it showed up clearly on the emg that I was having electrical activity like crazy. There was no doubt from the first emg, 2nd emg, muscle biopsy, etc. 2 years of testing before I finally was Dx with ALS on May 11, 2007. The fasciculations have been and continue to be constant, 24, 7.

What I'm trying to share with you is be thankful you had a negative emg result. The emg will show wild electrical activity even if you are not having spasms at the time of the test, if it is ALS. There are so many other things in the world that could be causing your symptoms, don't jump to the worse first.

Like others said try to calm down and be encouraged that maybe you aren't doomed with ALS. Have an open mind and wait for the doctors to look in to ALL the possibilities of what might be going on in your body.

We are hoping you get a good workup and find out it's something not related to ALS.

Peace to you.

God Bless
Capt. AL
 

BWk

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Twitching

My twitching has never stopped either, l don't feel anything while asleep, but I suppose it's just because I sleep so soundly. My twitching has slowed down at times and somedays it would almost seem like it was going stop, but then the next day it would pick up again. Let us know weds. what happens with the sec. emg. Barry
 

nho

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Al said:
As I said twitching doesn't stop. It is 24 hours 7 days a week. It does Not stop when you go to the doctors. I'm trying to help you here. You are freaking out way too much. Tough love sometimes helps. We all try to be nice to everyone that is scared and worried but I thought you needed a reality check. Guess I was wrong. Sorry. I truly think and hope you are wrong and are making a mountain out of a molehill. There are others on the forum like you that are undiagnosed but they have been looking for answers for 2 years. You are convinced you are going to die after a few months of twitches and some perceived atrophy that the doctors trained in this can't see. Maybe I'm becoming jaded but I just thought you needed someone to tell you that you're too smart to be falling into the ALS hole. I've been wrong before and admit it. Hopefully this time I'm right for your sake, not mine.
AL.

Sorry, but I completely disagree with you AL. I don't think twitiching is the same for everyone. Mine is rare and not very noticeable. Maybe I have gotten used to it and so maybe it does happen and I don't notice it. But I really think it is very insignificant in some PALS.
 
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