Probable ALS?

[JohnMc]

Hello everyone,

I am trying to get some information on how ALS is diagnosed. As I understand it, ALS cannot be diagnosed in less than 6 months, and often takes longer than this. In these forums, I see people who are experiencing many symptoms of the disease, but who have not been officially diagnosed, yet.

My neurologist, who specializes in ALS, has told me that it is 70% likely that this is what I have. I will meet with the doctor later this week to discuss the results of spinal tap and spinal MRI, but I expect that it will still be many months before a diagnosis can occur.

For the last month or so, my level of fatigue has increased, and it is beginning to affect my work. My concern is that this will continue to get worse, and my job will be at risk.

I have seen the phrases 'possible ALS' and 'probable ALS'. My question is whether these terms have any official meaning. Do doctors 'diagnose' people with 'probable ALS' and if so, is this a condition that offers any ADA protections?

I am very worried about the possibility of losing my job (and my insurance) in the middle of a recession when I am not in the best shape to find another job (I can only imagine how my slurred speech would go over in a job interview).

How have other people dealt with similar situations?

Thanks,
John

 

[ptich]

If you have neurological symptoms that clearly affect your ability to work, I think you can go the disability route no matter what is the diagnosis, and when doctors make their mind about it.

 

[CindyM]

I think this is right. 70% is a fairly high probability and I doubt your clinic Would expect you to be able to continue. Plus I don't think your job can fire you or lay you off due to slurred speech or clumsiness. I think they would try, but your medical records will prove the need for reasonable accommodations.

Still, it is better to take control first and try to go the disability route.

 

[patricia1]

Hi John
I started with slurred speech 9 years ago I worked as a nurse which became more and more difficult to place prescription to pharmacys give results on the phone to patients, so I finally decided to go on disability. My boss never ever suggest it, but I knew it was time.I would work as long as you can,as working keeps you active.
You will know when its time.
Hang in Pat

 

[tmasters]

El Escorial

John,

Neurologists use the "El Escorial" criteria to diagnose ALS. There are indeed "possible" and "probable" classifications, there is also a "definite".

One purpose for having such a detailed diagnosis criteria is clinical trials, or research studies. It's important to make sure to only include patients which meet the criteria into a study. Fortunately for me, I'm still un-diagnosed, as I don't have any UMN signs. And my neurologist told me that because of this I didn't qualify for his lithium trial.

Whether or not you satisfy these conditions, your ADA and disability benefits at work should be based solely on your disability, not on a specific diagnosis.

Here's a link with the El Escorial criteria:
http://www.wfnals.org/guidelines/1998elescorial/elescorial1998criteria.htm

BTW: according to a sampling of web participants, the median time from onset of symptoms to "official" diagnosis is approximately 18 months. A long time indeed. This is frustrating.

-Tom