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BethU

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Hi, all ...

I can't believe I have questions about my diagnosed again, but I am wondering if other people get a diagnosed of ALS in writing.

The issue has come up because my niece, who is taking time off work to run errands for me, needs proof of my diagnosed for her employer so she can get paid for family leave.

I had understood that in order to be treated at UCLA, all my test results would be evaluated by a neuro, then I would be referred to a Dr. Graves who would evaluate me further in person and perhaps do other tests, and then on the basis of his evaluation I would be assigned to a treating neuro.

However, I had such a hard time getting past the UCLA appointment desk even for the first-stage review ("call back Monday, call back Thursday, we don't have your paperwork, we do have your paperwork but it's being evaluated, we've lost your paperwork, call back Thursday, call back Monday" ... 6 weeks of this) that I decided to cash in my 401K and get evaluated at Cedars, where I could be seen quickly. I told my ALS Assoc. rep that I was giving up on UCLA, and she pulled strings, and got me an appointment to see a neuro at UCLA the very next day!

But the only "proof" I have that I have ALS is what the neuro told me in person at the conclusion of my second EMG, and his written report, which states: "This (test result) is consistent with a diagnosis of amyotrophic lateral sclerosis. Electrodiagnosis of myasthenia gravis is difficult to establish, since ALS is also associated with mild degree of decremental response on nerve conduction. Clinical correlation is suggested."

I had previously been diagnosed with Myasthenia Gravis based on my symptoms only: shortness of breath, slurred speech, problems swallowing, blurred & double vision, and respiratory failure requiring entubation and 3 weeks hospitalization last December.

I'll send the report to my niece and hope her employer won't read it too carefully, as it seems to me that the neuro who conducted the EMG was hedging his bets in writing. Anyway, I am now being treated at UCLA for ALS, based on this EMG, but there has not been any further evaluation of my situation.

My question is: Do PALS generally get their diagnosed in writing? How else do we "prove" to employers that we've got it?

BethU
 

rose

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Beth, back when I had family medical leave for the care of my father, the doctor had to fill out part of a form, this is what your niece will have to do. I also originally had family medical leave for this illness, back when we were going under the assumption it was autoimmune, and it was the same deal, the doctor that diagnoses or handles the patient has to fill out a form. I was able to print out the FMLA paperwork from my company website, and most likely your niece would be able to as well, but if not, someone in the human resources department of her company will need to provide her with it.

You might want to give your diagnosing doctor (your latest neuro in a string of several LOL) a heads up to expect the paperwork, and what you need for it to say. The government gets nit picky about this, so if you need her to run errand, help with housework and get take you or your husband to the doctor (for example) , you need for it to say that. There are also other specific things such as when your next appointment will be, and how long you are expected to be ill (I especially like this one!) It is going to probably be necessary for the doctor or your niece to state that she is your primary care giver. I don't remember the details from when I had it with my dad, because its been a number of years)

I did notice that my neuro when she filled out forms for NJ short term disability wrote "not expected to return to work" for an estimate of how long I was probably going to be unable to work. Your doctor should make sure its clear that this will be an ongoing need, and that you will not be recovering from it. (I know it sounds so depressing to hear that, but you want the approval without unnecessary hitches. )

hope this helps answer your question, take care :)
 

BethU

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What great information! That's what I needed to know. Thank you.

BethU
 

rose

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The only potential problem in approval would be if your niece's employer decides that you are not considered to be "immediate" family. This should be discretionary, I don't know for sure. I do know that the law governing the FMLA defines immediate family as spouse, child, or parent (not even parent-in-law) So her company would be going above what the law requires of them by letting her use this. That's why its so important that she states she is your primary care giver.

The actual form has a couple of pages, (at least) one is completed by her, one would be by your doctor.

She would be entitled to an accumulative total 90 days unpaid leave per calender or fiscal year (whichever her company goes by).

Good luck with this! :)
 

sharonca

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I see Dr. Graves at UCLA and asked his office for a letter for my insurance company. He wrote the letter, faxed and mailed it stating that I had ALS, that it was a progressively dibilitating disease, etc. I had to be insistent that I needed it in writing but I got it.

Sharonca
 

BethU

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Sharonca, thanks for that information! I will be seeing Dr. Pazos at UCLA in 2 weeks, so it's good to know that they'll put it in writing.

Rose ... my niece is going to check with her HR and see what they need. If she needs to be "immediate family," maybe it's not too late for me to adopt her!

BethU
 
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rose

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Sharonca, thanks for that information! I will be seeing Dr. Pazos at UCLA in 2 weeks, so it's good to know that they'll put it in writing.

Rose ... my niece is going to check with her HR and see what they need. If she needs to be "immediate family," maybe it's not too late for me to adopt her!

BethU
How funny, you know I actually thought about that! (the adoption part) I hope her employer will be willing to give some leeway considering all the circumstances. My employer followed the letter of the law, but airlines in general are probably like that. In the world of flying, the almost worst thing a crew member can do is be absent, the absolute worse thing is to be late! No kidding, if someone thinks they're going to miss show time, they'll call in sick at the last minute rather than be reported late. And to think I miss it now! good luck with this. :)
 
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