Hi, newly diagnosed with MND. Question about SSDI

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Babycakes

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Hi all, thanks for being here.

I've recently been diagnosed with Motor Neuron Disease. Specifically I have weakness in my right hand/arm. I'm doing some reading/research here tonight and am wondering about SSDI....my diagnosis is MND so far...not specifically ALS. If I were to file for SSDI, should it be approved?

I'm still working, I'm a nurse. I'm still able to do my job without co-workers suspecting anything....but it takes more effort.

Also, I'm working on getting a second opinion, meeting with OT, improving my diet and stress level etc. I have a lumbar puncture scheduled in 2 weeks. Otherwise, I think all the diagnostic stuff is done. Oh and I have 2 kiddos 3 and 5.

Thanks for any advice.
Kim
 

Babycakes

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Also, the thread talking about acceptance/denial was really moving. I don't know where I'm at.....I'm still in a fog some days. I'm still hoping the weakness won't be throughout my body, that it will stop. Its tough not knowing what will happen, how fast, how debilitating etc.
 

Nikki J

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We all wish we had a crystal ball I think to know how to plan and prepare. Hope for the best, prepare for the worst- easy to say, hard to do.

You will be denied ssdi if you are still working no matter what your diagnosis. You can only make a small amount monthly while getting ssdi. Are you planning to go out on disability?

I don't think a diagnosis of mnd, other ( is that what it says?) automatically triggers TERI and automatic approval. I think it has happened but I had a friend who was denied and had to appeal. She then got diagnosed. Because she was in appeal it took longer and got very messy. I think they are more likely to fight a claim the younger you are. At least that is what seems to happen

When is your second opinion? Can you wait and see what they are willing to put on paper?
 

Kristina1

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Hi Kim, I'm sorry to hear about your diagnosis. I don't have an answer to your question, but I just wanted to send you virtual hugs. I also have young children and am recently diagnosed (I was diagnosed in March). This is a wonderful place for support.
 

soonerwife

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Sorry to hear about your dx Kim but welcome.
 

Babycakes

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Nikki,

I'm still going back and forth about stopping work. I'm definitely hoping to work til the end of the year (to switch insurance at my job..I work at Stanford but have Kaiser insurance currently ). I have LTD through my work, so that will be a factor too.

My current insurance is through Kaiser. My neurologist is Aaron Lewis (he's been super thorough and great about talking through my questions...he's not on your doctor list....I'll add him). My MD offered 2 Kaiser neurologists for a second opinion. Thankfully, both are on your list and one has a horrible review....so dodged that bullet...thanks!
 

Vincent

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You know the thing about no one on their death bed says I wish I had spent more time working? That applies to you now. I stopped working when fatigue became too much to handle. It's been since December 2014 and I haven't missed it. With an unknown timeline, you don't want to go from work to a wheelchair or worse. If nothing else the diagnosis should require at least a month off on stress leave. I know money is nice, but it seems like as a nurse you would have good LTD that would allow you to get by. This disease comes with lots of fun choices you have to make quickly. Welcome to the club no one wants to join, but if you have to be here it's a good place to be. You are among friends.
 

lgelb

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Kim,
I understand wanting to change health plans and go out on your own terms next year, and I don't know what your unit or responsibilities are.

But it's an unpredictable disease. So the real question is, if you progressed rapidly after the first of the year, would you regret having spent your last active months at work? If not, follow your plan, knowing that if the disease makes it impossible to fulfill your duties at some point, you will have to leave in 2017 anyway. If however, work is not how you want to leave mobility behind, leave now.

Best,
Laurie
 

Babycakes

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I really appreciate the perspective. I honestly don't know if I'm psychologically ready to make that decision. It's like admitting it to myself. Man I totally should take a month off for stress related to a big diagnosis like this...

Also, stopping work would be complicated...probably include a move to be closer to family etc.

It's overwhelming
 

Nikki J

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I do think it is at least advisable to wait for your second opinion and then see what your options are.

If you do get an ALS diagnosis and ssdi after the 5 month wait you would get medicare so the switching from kaiser insurance would not be an issue. Of course if you carry the insurance for your family you would need to look at what you being on medicare means to them.

All this is complicated and bears thinking about but until your diagnosis becomes clearer you may not be able to make an informed decision. Of course you want to plan but you likely need more information.

That said, also consider fatigue and stress are probably not good for ALS and I am sure your job is tiring and stressful even if you love it!
 

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I would agree about waiting for the second opinion and give yourself the time to do that so you can make the big decisions with slightly less rush. Sure you don't have all the time in the world to make the decisions, but you do have a little more time. It's overwhelming, it truly is - breathe and know that it is that huge xxx
 

KimT

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Just know that you don't have to do everything at once. Step 1 is to get the second opinion. Even if it is "probable ALS" that will get you approved for SSDI.

I was diagnosed when I was still very functional. I tried to work another two semesters because it would bump up my lump sum distribution but it was way too stressful to do that and prepare all the paperwork for my LTD and SSDI. I lived alone and was very "Type A" and a perfectionist. I ended up taking my 12 weeks of FML so I could reduce the stress and still have time to make the decision. I had ADA accommodations to work from home and do all my teaching online. I chose to leave rather than keep teaching. I don't regret it for one minute.
 

Babycakes

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Thanks for the support guys. <3
 

Babycakes

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Hi, it's been a few weeks : ) since I've posted last time, I've had a second opinion and a lumbar puncture. The second opinion agreed with my neurologist, but requested a bunch of labs including a more sensitive motor neuropathy panel. One thing was mildly elevated, GD1a antibody. My neurologist is thinking of trying IVIG or steroids. Does anyone have experience with this?
 

Kristina1

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I don't, but maybe try posting a separate post in the general forum or PALS forum. I bet you would get a quicker response that way from those who have done IVIG.
 
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