In the process of testing

[KimT]

Hi Marie,

As Nikki said bad results can mean lots of things. I would expect Columbia to do another EMG because they're the experts.

Try not to focus on the pain. I bet you'll have a better experience at Columbia.

 

[HappyGrl1]

Hi Nikki,
I'm sorry...I can't get the graph to copy here. But, here is the report conclusion:
Complex and abnormal study:
There is electrophysiological evidence concerning for a generalized disorder of the motor neurons or their axons. The patient tolerated the test poorly and it was stopped early secondary to patient discomfort. More extensive study of the contralateral side, thoracic paraspinal muscles and cranial nerve innervated muscles would be warranted to further evaluate.

Like I said, it was very painful for me. Are there other tests to do to have a definitive diagnosis. The other issue is getting in to actually get seen by these doctors. It seems like such a long way out to live without a definitive diagnosis. Thank you!!
-Marie

 

[Nikki J]

Thanks for trying. The summary is a little vague.

An EMG even if classic for ALS is only one piece of the puzzle so yes there are other tests they would do. MRIs and a boatload of blood tests are almost always done. Sometimes a spinal tap.

Columbia will certainly give you an expert opinion. I do think they will repeat the EMG. There is a difference between examiners in technique so the experience may be different. Perhaps ask if you can have a one time dose of anxiety medication so you can relax. It really shouldn’t be that bad.

 

[HappyGrl1]

Hi Kim!
I sure hope so!!

 

[lgelb]

To post the graph, take a screenshot of it, then upload it as an image attachment (click the Go Advanced button below the box you type in, as you are posting).

 

[HappyGrl1]

Hello everyonee!
I wanted to give you an update on my testing. It was officially diagnosed this past Monday that I do indeed have ALS. My husband has Parkinson's also, so I don't know where this will wind up for us. I have a Frozen shoulder that is very painful. I'm walking with a cane now. I was just put on Rilozole (I think that is how it is spelled) and Buclufen for cramps/stiffness. I'm not sure how everything is going to go. Thank you!
-Marie

 

[Atsugi]

Damn. Sorry to hear this news. I really thought your diagnosis would be much better.


Go to the Veterans with ALS forum on our website and open the 10-page PDF for Veterans with ALS, Lots of info in there.

 

[KarenNWendyn]

Sorry to hear, Happygirl. You’ve come to a great place here for information and support. I hope you can stay positive.

 

[swalker]

I am really, really sorry to read of your diagnosis. I sure expected and hoped for a different outcome.

Having that diagnosis can make a significant difference in benefits available to you. Be sure to explore this site and ask questions as they come to you.

Also, the general wisdom is that anyone with such an important diagnosis should get a second opinion. I encourage you to do so.

Steve

 

[lgelb]

Very sorry about your diagnosis, Happy. Definitely get a second opinion and in re the "frozen shoulder," PT might help but make sure first it is not subluxated or at risk -- it would affect the regimen.

Best,
Laurie

 

[Kristina1]

Marie, im sorry for your diagnosis. I just saw this thread now and to me your concerns were valid from the beginning. I get a lot of similar spasticity and curling fingers. You should join the main forums and keep in touch. There is a lot of support and helpful info/feedback from members.

 

[KimT]

I'm so sorry. We're here for you. Thank goodness you're a vet. You'll have lots of help getting transportation, remodeling, etc.

Also, thank you for your service to our Country.

 

[HappyGrl1]

Hello Mike!
I will do that. I've gotten a second opinion on my diagnosis. One from the VA hospital, the other from Columbia. Thank you for the information. I'm staying positive!!
-Marie