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Distinguished member
Dec 10, 2007
re "When were you diagnosed with ALS?"

is there a formal process?

the 1st neuro i saw, back in '05, felt i had als but sent me for a 2nd opinion.
since then i've seen five, two of them lead als clinics.
#4, in nov '07 put me on riluzole and ordered a bunch of tests.
some of those tests didn't get run, so he reordered in mid-jan and i'm still waiting for the results.
#5 says it is als
my riluzole rx was written up with code "335.20" (ALS) in nov i "diagnosed"? i'm not sure. maybe '05, maybe nov-07, maybe "not yet"?

What did the 2 als nuero's say?
1st said IF it's ALS, its atypically slow. He ran an MRI but disappeared from his clinic without sending me the results.

after that, I gave up on neuros for awhile and pursued other treatments. I was pretty stable for awhile, but then began declining again. Thats when I went to the 2nd ALS specialist who put me on Rilutek,but when I asked about a diagnosis he said officially its a general motor neuron disease until the tests come back. I'm still waiting for a couple blood tests. He won't give me the results by phone or email, rather I have to wait months for an appointment. Its my understanding that thge insurance companies only pay for a visit, so... but when the test is for something highly infectious I would hope that a positive result would be reported promptly.

He is writing "335.20" on my Rx's--I believe 335.20 is ALS.
335.20 is the ICD9 (The International Statistical Classification of Diseases and Related Health Problems) code for ALS.
I haven't been actively following posts lately.

Have to respond to yours though.

Why would any doctor in their right mind code for the insurance and everybody else a diagnosed of ALS and not tell you? This affects you financially big time! It also affects the rest of your life. Press for a here and now diagnosed!
thank you for replying,
but i'm still confused--what changes when i'm officially diagnosed'ed? i'm already on riluzole and is paying for it.

he ran blood tests back around thanksgiving, but the hiv and gm1 (mmn) tests didn't get run, so he re-ran in january--i'm still waiting for those results.

i guess i'm in the atypically slow progression group. i've been living with a pending als diagnosis for 35 months. most of that time the only 100% clear visible undeniable atrophy was in the left hand, but i could feel it in other places and as of last summer my right hand is also visibly atrophied and my neck gets so very tired.
Perhaps you do not understand what the future may hold. Are you working now? Will you be able to do your job in the future? Can you walk? Most importantly, can you TALK?

If you have a job that allows you to work no matter what, without the use of limbs, etc... that's great! Not trying to scare you, but if you work for a company, they may notice your decline as my husband's did. Do you have LTD insurance? You need to plan ahead.

IF you have official diagnosed then you will be approved for Medicare and SSDI. And you might want to tell your family, your friends cause you don't know how fast things can go.

If you can still work---GO FOR IT---and don't sweat the small symptoms!

My husband wishes he could still work, but his trade is "running of the mouth" LOL.:mrgreen: Now he needs an interpreter!
i don't know if you meant those questions literally, but
still working--yes, but its becoming increasingly difficult
able to do my job in the future--no
ltd ins--yes, std too
told family--yes
told friends--some. some co-workers too
i'm fully aware that i may have little time left, both as a semi-capable human and living.
i'm hoping the als clinic and mda will guide me through this in due time

maybe i've been fortunate enough to hold on long enough and to get lithium. if it just stabilizes me, i'll still be crippled, but i'll take that!
Just want to make sure you know what your options are. Sometimes docs don't think about the impact an illness has on ones personal life. I would think that it would be important to nail down the diagnosed so you can move on with your life.

Yes, let's hope Lithium will provide all PALS with at least some therapeutic value!

Good luck to you my friend!
Took mom 2 1/2 years 9 specialist for a diagnosed 2 days ago. It was all could be, don't think etc. Was some hope it was spinal problem (she had many). But now we know.
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