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scc

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I am currnetly going through a round of tests, and while my neurologist has not said he is looking specifically at ALS, the research that I have done indicates that ALS is one of the diseases that match my symptoms. I had an MRI of my brain on Thurs. On Monday, I will have an MRI on my spine. In a couple of weeks an EMG and NCV will follow. My question is, how is a diagnosis of ALS actually reached? Is there a specific result from any of these tests that brings a doctor to this conclusion?

Here is a run down of what I have been living with. Any feedback is greatly appreciated.

For about a year I really thought I had restless leg syndrome. At night, I had leg cramps, twitches, and insomnia. Then in October I had my first fall. No more falls until March. Between March and today there have been about half a dozen falls. I have no warning that the fall is coming. I'm just walking and all of a sudden I'm on the ground. I also trip and stumble over my feet. I have now begun having cramping, particularly in my feet and calves, throughout the day. Since I'm only 35 I went to my GP. All of my bloodwork came back normal. He sent me to the neurologist, who said that because my toes went up instead of down when my feet were stimulated these tests were prudent. He didn't give much feedback on what he thought could be the source of the problem. So, upon research, I have learned a little about ALS. Thank you in advance for taking time to answer these questions. I realize there could be many reasons for the symptoms and many of you already know what you are dealing with and have much more to worry about than unfounded concerns.
 
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If there is anyone that is able to provide a follow up for this question it would be very helpful to others that have this question.

How is ALS diagnosed?
 

Granny

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Hi scc,
I am not an expert in explaining how ALS is diagnosed, but just wanted you to know that your fears are not unfounded, anyone going through tests like that would be fearful, and we are glad to have anyone post here that may be helped by some of the knowledge of the people on this forum. Welcome aboard, and I hope your tests show that you do not have ALS.
My thinking is that it is a process of elimination for the most part, the doctors rule out other things first. I do know that an MRI will not detect ALS.
Someone better informed than me will probably help you with answers.
Prayers and hugs,
Leah
 

ladave

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Here is what I have learned from extensive research and talking to my own neurologist:

ALS is a "differential diagnosis", meaning that because there is no specific test to diagnose ALS, it is a diagnosis arrived at first by clinical history, then by an Electromyelogram (EMG) and Nerve Conduction Study to determine if the symptoms of ALS or other Motor Neuron Disease are present. If so, then a range of other tests, including an MRI and blood tests, are done for a series of other diseases and syndromes with symptoms that "mimic" ALS, are performed. If those tests come up "negative", you win the kewpie doll in the corner.

(Note there are other Motor Neuron Diseases besides ALS, which involves impairment of both upper and lower motor neurons. If only the upper motor neurons are involved, it is called Primary Lateral Sclerosis (which has a much better prognosis than ALS). If only lower motor neurons are involved, it is called Progressive Muscular Atrophy.)

The reason your doctor took note of what your toes did is because that may present evidence of upper motor neuron damage. It is known as the "Babinski" reflex.

The crucial tests are the EMG and Nerve Conduction Study. (I just got copies of my report and they make for very depressing reading, which I'll share in another thread). That is where signs of denervated muscles will either be present or absent. Until then, you just need to hang on and hope. My hope, for you, is that you do not join us as a PALS (person with ALS), but if you do we'll be here to support you.
 

Al

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Well scc you and I have a bit in common. When I was diagnosed in Oct/03 I was pretty sure I had ALS before the neurologist told me. But now I have learned a bit more about it. First of all are you in the U.S. or Canada? It makes a difference when you get a second opinion whether you are paying or someone else is. No matter what the results of the nerve conduction studies and the EMG are if the news is bad you will want a second opinion and prefferably with a Dr. that is experienced in motor neuron diseases. Those are the tests that show the most in a diagnosis of ALS and a few of the other motor neuron diseases. So hopefully the news will be good for you. There's something going on for sure. It will take time to be sure. Try to keep a stiff upper lip as the British say.
 

Bugsy

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I too went through all the testing.Catscans MRI's pints of blood.Seems to me they were ruling out other diseases,MS ,Lyme.....and so on ,till ALS was the only one left.
Just as Granny stated,the process of elimination.
 

TBear

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Diagnosis of ALS throught the process of elimination I believe is the standard practice, however I read recently that Neil Cashman, now in Vancouver, is developing a blood test for it. One thing at a time till we solve this!

CHeers

T.
 

martyt

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Hi,

This is a helpful discussion. My wife has had the velocity and conduction tests, looking like ALS although with a few odd results; now we are on line for the second opinion. The diagnosed is ALS so far.

But here's one thing about the diagnosis that troubles me: a friend of mine said, if at some point your illness slows, stops or reverses, then they tell you, "We conclude that you were misdiagnosed, this isn't ALS." So that makes me a bit confused (a condition that's pretty normal for me). Does the definition of ALS necessitate a steady path downwards?

Marty
 

ladave

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Dr. Jim McCarty posted the following on the ALS-TDF forum. It may help answer your question:

"From Mitsumoto and Munsat’s book: Amyotrophic Lateral Sclerosis: A Guide for Patients and Families (second edition, starting on page 35)

“Patients with a Prolonged Course
It is well known to ALS experts that occasional patients who appear to have typical ALS may either cease to progress or progress very slowly. A good proportion of patients with ALS are long survivors, living beyond 5 years after diagnosis, and 8 percent to 16 percent of patients live up to 10 years. The duration of illness alone does not distinguish between typical and protracted forms of ALS. In fact, people who survive for more than 10 years may not be all that rare.”

The text then mentions that “In 28 male patients of 613 patients with sporadic ALS, progression ceased for at least 5 years” and goes on to discusses possible cases of reversible ALS. "
 

martyt

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Thanks LA Dave. I have M & M's ALS book on order.

This whole thing is a dance between trying to be realistic, but also trying to keep up hope.

- Marty
 

Carol Deboer

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NEVER LOSE HOPE! NEVER.... Hope is an important component for all ailments, not just als. Hope keeps us all going.

Have a good night. Carol
 

Buxtehude54

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Regardless of your diagnosis, you would be well served to use a cane, walker or other device in order to try to prevent the falls. In my case I used to drag my toes and stumble. But at other times, I would just drop down. My thighs had atrophied and I had no strength with the rear muscles of the thigh. No need to break bones and make matters harder.
 
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