What was your last test that said you had ALS?

[smoki611]

Just curious to see what test finally gave you the answer that (yes) you have ALS.
Thank you

 

[Nikki J]

Hi
First can you clarify? Is your daughter definitely diagnosed with a motor neuron disease and you are grasping at straws? If she is not then please post on one thread. Your original thread was moved to the Do I have ALS section and you should add to that.

Secondly to give you the benefit of the doubt. The EMG is the gold standard. Without the EMG meeting specific criteria you won't be given an ALS diagnosis. Sometimes there will be tests done after as a Hail Mary looking for a possible mimic often blood tests, occasionally an MRI.

 

[smoki611]

Thank you Nikki, Yes she has been diagnosed with MND for sure. She had the EMG. The doctor wrote on his report that was being sent to the Boston hospital just like this of what he is thinking;
ALS/Life Threatening Disease
I will go the other post, sorry about that.

 

[Atsugi]

SMOKI: No need to leave.

Persons who are diagnosed with ALS/MND, or who are relatives or caregivers for persons diagnosed with ALS/MND, are welcome to post in any subforum of this website.

Persons who are not diagnosed with ALS/MND, and are not relatives or caregivers for diagnosed persons, are asked to restrict their posts to the Do I Have ALS subforum, and are asked to stick to their own thread, not commenting on other people's threads.

 

[Diane H]

There is no single test that identifies ALS positively. Diagnosis requires physical exams to track progression, lab work, EMG's, again often repeated over time, depending on the doctor there are CT s/MRI’s, biopsies, and more that may be done. The only definite test is progression over time. With rapid progression you get a rapid diagnosis. With slow progression it can take years.

 

[Nikki J]

Thank you for clarifying and what Mike said is right. One of the other mods had moved your first thread to DIHALS apparently thinking the diagnosis was not made so that is why I wanted you to tell us so this thread would not get bounced around too.

Diane is correct the diagnosis is not solely by EMG but for most here the EMG tends to be the last test which is what you asked. My sister had MRIs ( plural) multiple blood tests, a spinal tap, evoked potentials and a separate nerve conduction study as well as a clinical exam. Then she had an EMG and was told then and there it was ALS.
You will get good care at the Brigham. Who is she seeing?

 

[mpnatx]

After my EMG, which was the first test I had by neurology, he said he thinks I may have ALS. After that, ALL the other tests came to rule out everything else.
Then the second opinion with the ALS Specialist confirmed ALS.
So, for me, the EMG started the ball rolling.
Marty

 

[KimT]

Mine was the final EMG. They did all the other tests after the first EMG (MRIs, blood, etc.)

 

[mich5]

i had the many tests to rule everything else out, but i finally progressed enough to visually see atrophy in my hand, and then the emg for the diagnosis.

 

[smoki611]

Thank you all for being so kind. Kim, when you say final EMG, how many did they give you and how far apart were they? Did anyone ever have the neurologist say it looks like Post Polio (when you never had Polio?)
Nikki, the Doctor in Boston is Doctor Allan Ropper. Not sure if I asked this before but can you have MND and not have ALS?
I have read so much on the different web sites I have my own theory.......2 year's ago in Mass & NH, there was a virus going around reacting like polio, see below
Three of the children were sick with a respiratory illness before they developed paralysis. Two of the children tested positive for a rare virus — called enterovirus-68 — that has been associated with polio-like symptoms! Has anyone heard of this?

 

[Nikki J]

I answered the MND question or tried to on your other thread.

 

[smoki611]

Nikki she is going to see doctor Allan Ropper, he is supposed to be the best in Boston Brigham & Womans

 

[Atsugi]

I found this:

Every year, millions of children in the United States catch enteroviruses that can cause coughing, sneezing, and fever.

In 2014, the enterovirus that most commonly caused respiratory illness in children across the country was enterovirus D68 (EV-D68).


"As of October 23 it was believed that the actual number of cases might be 100 or more."

I don't think we have any expertise in the matter on this board.

 

[Nolesac]

I have had 2 Emgs done by separate establishments and Neurologists only 1 month apart, one Dr wants to start me on IVIg for MMN, the other wants to start me on Riluzole for ALS, and join drug test programs. I have had numerous test done by the first Neurologist including MRI spine/brain/brachial plexus, lumbar puncture, blood tests his EMG specifically states does not believe this can be ALS due to lack up upper motor signs. I have only seen other DR at mayo once whom did one EMG took one look at me and said it was ALS.

 

[lgelb]

Nole, if you read the stickys you will see the rule that unless/until you are diagnosed w/ ALS, you should stay in your own one thread, thanks.