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lhagsjr

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I have twitching, I have atrophy(most significant in my quads and arms), my shoulders pop and click, however I can walk fine, eat fine, swallow, etc. This is not the confusing part, maybe Im just progressing slowly BUT, 3 different EMG's(1 in March of 2007 by a local neuro, 1 by ALS Clinic in June 2007, 1 by Neuromuscular special last month) all 3 EMGS had zero fasics,PSW's, fibs. ZERO. Dead Silence. Is it possible to have these results over a year's time and still have ALS. I also had a open biopsy in July 2007 which showed very mild atrophy but no signs of denervation or grouping. My main question is, Can I possibly have ALS with these test results? Its weird, I have all the signs and symptoms but the tests show no signs of a serious problem. I just dont know what to think anymore or know where to go?
 

Al

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I'd say no but not being a doctor it's just a guess. Given the tests you've been given and the results you have, I'd get on with your life. You could chase around for a few more years worrying yourself even sicker and using up all your insurance money and still know nothing. Or you can convince yourself that you are not going to die (Get counselling or meds) whatever it takes. Take back your life. You've wasted prescious time that you'll never get back.
AL.
 

hopingforthebest

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Life Is Short Reach For The Stars!

Listen To What Al Is Telling You Young Man! Life Is Too Short And You Need To Live It While You Can!
I Have Been Praying For You So Do What You Need To Do And Start Thinking Of Your Loved Ones That Love You And Need You And Less Time On What You Could Have.
 

TomR1972

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Similar

I have been twitching for about 10 months, have weakness andcan not pinpoint at least easily much or any marked atrophy. Have had only one emg test and it was done half-assed by my belief. However three neuro's one who deals with als patients regularly feels I don't have it.

I am going to get a full lengthy emg probably in Feb and hope to put this all to rest. My problem is that in just the last month I have had a weird feeling in my tongue, trouble coughing up phlegm and at times swallowing phlegm is strange. I can eat and drink everything fine however. Very confusing!

You sound better off than myself and if you have anything at all it will more than likely be so slow moving that its not worth worrying about everyday. I know much easier to say than do. Just keep getting emg's once a year if problems persist but try to move on.

I hope everything works out for you. Keeping my fingers crossed!
 

Lorie

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Lou

I Have Been Through The Same Thing. Als Can Only Be Dx At A Certain Point. As I Always Say, Tim Had Symptoms For 7 Years Before Dx. Each Person Had Their On Journey With It. I Hope Neither Of Us Have It. I Have Been Through Two Neuros In The Last 1-1/2 Years. I Have Dents Where The Twitching Started In My Feet, Ankles And Lower Calves. I Twitch All Over And Cramp. My arm sockets hurt a lot. But, I Told My Internal Doc. Last Week- I Updated Her, But I Was Not Going To Anymore Other Neuro's For A While. Why Waste The Time. Most Als Patients Lose 60% Of There Muscle Tone Befor Being Dx. I Am Pulling For Us And Hope And Pray That Is Not It. I Need To See My Brother Through This. I Want To Help Tim And other patients All I Can. He Depends On Me So Much And I Love Him Dearly. He Could Not Handle It If I Have AlS. I Dont Talk To Him About It. Although He Knows I Am Having Some Problems.


Lorie
 

patricia1

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ALS is Rare

I know alot of people dont think aLS is rare, maybe not as rare as years ago But it is a rare disease The reason we think it is common its because we are involved in it. Its like when I bought a new Pt cruiser car .All I saw were alot of PT Cruisers, but I never notice them before I bought mine. Als is rare,and alot of people on the forum THINK they have it. I feel bad for them. Life is precious Wasting time thinking about this is so sad. I think the people with ALS are far better off then the one obsessing about it,because we are dealing with life alot better.
I want to say to people with these vague symptoms .Take a rest from the forum. Get a hobby a interest some thing to get ALS off your mind and see how you feel. I only wish peace for those who have and think they have AlS Pat1
 

Thumbs Up

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Yes, I agree. With a 50/50 chance of ALS, I don't give it a thought. Why worry about something that you can't change. What is mostly on my mind is a breakthru for this awful disease.
 

CindyM

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I think the people with ALS are far better off then the one obsessing about it,because we are dealing with life alot better.

I have noticed this too, Pat. Seems like it is human nature to fear the unkown. But when the awful truth is known for certain, people react with sadness, sometimes anger, and then grace and a certain calmness.

My ALS clinic told me to prepare myself for getting worse. There was a day when I would have panicked over those words. But we have people here who have lived with ALS for years- just like you. And so when I see you guys managing, I know it will be ok, no matter what the future holds for me. So for me, this forum keeps me calm. I think if it made me more anxious, I'd have to give it up. JMO. Cindy
 

pldo

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My husband works in insurance and he was saying he has seen cases of people living over 20 years with ALS, and def. more then 10. He said they choose to vent, or they choose other things that prolong life. My father died several years ago of a rare brain tumor, now it can be treated with radiation. There is always always hope. You just need to have faith in G-d.
 

WornOut

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I was reading through the posts here, and I hope no one minds if I speak from my perspective. I have been dealing with the symptoms of als for awhile now, and just last year was told by a doctor that I had the bulbar form of als. However, no neurologist would back up what he was seeing when he examined me, and I was told that I would not be able to get Disability. I don't know that I agree with the statement that the people with als are better off, you just know and have had verified what you're dealing with. When the time comes, you will be able to get medications and equipment that you need; I think there's a certain security in that. I cannot get my medications, I won't be able to get any equipment, and it's very frustrating.
 

indigosd

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Worn out, you replied to a post from 2007. I agree that IF you have ALS it is without a doubt easier to have the diagnosed. Why would a Doctor give you that diagnosed and a Neurologist deny that diagnosed? That does not make any sense.
 
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