Probable ALS and SSDI

[TeamDrea179]

Hi everyone,

Long time reader, first time poster. I am grateful for all the fantastic information I have learned here along my meandering journey.

I got a probable ALS diagnosis in May at the age of 33 and another EMG in August confirming my probable status. I went from full-time to 30 hrs/wk in September and am now considering applying for SSDI -- I have a desk job and mostly work from home anyway, but things are getting harder...

Does anyone have any experience applying for SSDI with a "probable ALS" diagnosis? I read the (awesome) sticky on this topic, but it talks about a definitive diagnosis. But one neurologist told me that ~50% of pALS never reach the definitive stage b/c they just don't meet the clinical criteria, but usually doctors stop doing EMGs because they suck and they can tell from experience.

If it matters, I've been in an ALS-related exercise clinical trial for 6 months and my employer doesn't offer STD or LTD.

TIA!

 

[Nikki J]

It sounds like you have probable ALS by the diagnostic criteria which as you well know is a whole different animal than probably ALS. So I think you are diagnosed and should get ssdi. I have wondered how ss deals with this. I wonder if you can get your neuro to write something definitive to go along with the paperwork? Just in case. I am sure they do not want to keep you from the benefits you so deserve
Being documented with the genetic defect I have by some criteria I needed less findings to get the definite diagnosis
Really sorry you are here but happy to meet you

 

[Vincent]

Hi, I'm sort of in the same boat you find yourself in. I also do not fit the clinical criteria for definite ALS. I am on Riluzole, and will be followed on the ALS clinic. The Neurologist thinks it will eventually present as definitive just not now. Having said that, I have a letter describing to the nice people at the Canadian Government that i have a progressing neurologic condition with a very guarded prognosis, making me unable to work. The letter does not have to state the disease, just the symptoms and prognosis. Hope this helps.
Vincent

 

[TeamDrea179]

Thanks, Nikki and Vincent!

Nikki, right -- "probable ALS" not "probably ALS." 2 regions of my body involved (right arm, leg) according to the EMG. My neuro said I needed 3 regions for the definitive diagnosis. I don't have the genetic defect -- oof, so sorry

Vincent, our situations do sound similar. I'm on Riluzole too and enrolled at the ALS clinic. Sorry we're in the same boat, friend!

You're both right that I should go ahead and get a letter from my neuro. Better safe than sorry. Plus, with the exercise study, I'm constantly filling out that functionality scale, which still shows I'm relatively independent. Plus, my PT has an incentive to show that I'm meeting our PT goals (e.g. improving) for insurance purposes. With a definitive diagnosis, I know none of that would matter, but I wonder if they would dig harder with just a probable diagnosis. Who knows, maybe I'm over thinking it...

I'll certainly update when I have more info.

 

[Nikki J]

It is no longer true for medicare at least that you must show improvement for services like pt to be covered.private insurance usually follows medicare rules. There was a decision a couple of years ago based on a court challenge that sometimes pt for maintenance is a medical necessity. A shocking number of people are unaware of this including providers. I knew a young woman with als/ftd who landed in the nursing home and neither the pt nor the social worker knew this ( and they were glad to find out more reimbursement for them aside from the benefit to my friend)

If your neuro routinely uses the strict criteria this must have come up. Is there a clinic social worker? They would know in a heart beat. But it occurs to me you are almost certainly coded as 335.20.as I do not believe there are different codes for the possible, probable definite categories so if they look at Icd9 codes it is going to show als without modifiers

 

[TeamDrea179]

I didn't know that regarding PT. Thank goodness for you!

It has not come up at the ALS clinic, but I probably haven't asked the right question.

Good point on the Icd9 code! That's SUPER helpful. My PA friend who works for the VA just looked it up and there's only the 335.20 code for ALS. I don't see it in the neuro's note, only for the C9orf72 test (which was negative). So that gives me a lot of hope.

I'll say it again…thank goodness for you!

 

[nebrhahe53]

Get a letter from your neuro stating probable ALS by physical exam and emg and that you are unable to work (disabled) due to (whatever you are weak in now)). That should be enough for ssdi, Note that in America it is not as easy to get benefits as in most other civilized countries, so unfortunately the Canadian model wont work here.
Your benefits should start 5 months after you are accepted, at which time you will also be eligible for medicare, not that that is such great shakes, but its better than nothing.

 

[Nikki J]

It is Jimmo vs sebelius for pt
Glad I could help!
Where do you go for care if you do not mind sharing?

 

[TeamDrea179]

Nikki, I currently go to Johns Hopkins but am slowly switching to GW in DC. JHU has trials and I like the folks there, but they don't have as many disciplines in their clinic. I'm trying to maintain connections to both though in case a good trial comes along…

nebrhahe53, thanks and good point on Medicare. I have terrific insurance through work right now, so I'm spoiled. My current insurance covers Riluzole with only a $30 copay so I guess that's something to look into/consider.

 

[Nikki J]

My sister also moved on from JHU clinic for similar reasons but as diagnosticians they are brilliant. Are they the ones who tagged you probable? And are you in Dr Maragakis's study?

 

[TeamDrea179]

Yes and yes. Diagnosed as probable at JHU (Dr. Corse). I'm in Dr. Maragakis's exercise study, though not sure I'm adding much value. I'm in the "endurance/cardio" group but I can never get to the target heart rate. I was in good shape before (triathlete/marathoner) and I'm super spastic. The equipment just doesn't work for me….