just an update

just had a PFT yesterday and my FVC is down to 64%. I am being referred to the National Jewish Hosp. here in denver. its my guess that i may be fitted with a bipap and a feeding tube and seeing a speach pathologist. wish me luck guys. and just a side note, i was denied on my social security disability benifits i have a group called access working on my claim hopefully thay can get it worked out. my Dr. had a very dumb note in my file and he fixed it. seems like sometimes things just dont want to go your way and you have to work for every little thing.

Hi,

I am very sorry to hear what you are going through.
With your FVC values that low, yes, you definitely need the BiPAP. I hope the sooner you get it the better.
Regarding the PEG feeding tube, it will be best for you getting it now than waiting until later (when your FVC drops below 50%, no none will want to do the PEG on you, thus, now is better).

In regards to Social Security benefits for Disability, may I ask why were you denied benefits?
What was your diagnosis? (The one done by your Neurologist).

With an ALS diagnosis, you should get approved for SS and Medicare as well. There is a waiting period before Medicare kicks in and I believe it's 5 months.
Being ALS classified as a terminal disease by the Social Security Administration, you should have been approved unless your diagnosis was something else.

Take care.

Nighthawk,
Despite my correcting your previous posts, you are still repeating misinformation.
Not everyone w/ ALS is Medicare-eligible. Those not eligible for SSDI (which is what actually triggers the "automatic" Medicare eligibility) by virtue of hours worked are still not eligible just because they have ALS.
A PRG or PEG (different procedures, both insert a feeding tube; the PRG does not require sedation) with the pt on BiPAP is considered a very viable option even if FVC is <50%. There are several study abstracts on line (check Medline) reporting successful series even in pts who couldn't be off BiPAP long enough to measure FVC.
I really worry that I am going to miss one of your posts and someone is going to be misled, so please catch up to the facts.

Best,
Laurie

my neuro. had my diag. as "certain for als" i think thats what might have been the basis for deinial. that has been corrected. so hopefull the social security admin will taken care of.

Thanks @"patrick123" for clarifying this.

I know certain MND classification would not qualify for S.S. benefits. That's the case when your Neurologist diagnoses PLS (which has better prognosis than ALS) or "other MND" which is clearly not a definite ALS diagnosis.
At least you found out your Neurologist made a mistake with the diagnosis and it was fixed for you so you can receive your benefits.
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@ "lgelb":

Would you mind letting me know about all those "other threads/posts" by me, where I supposedly "misled" people and you "corrected" me?

I don't come here to mislead people spreading misinformation. I try to be as accurate as possible and, if I don't know the answer to a question, I usually refrain from posting until I can find a credibly source where I can back up my claims.

I do know that, to qualify for S.S. disability benefits in the USA, you need to have worked at least "40 quarters of coverage" (equivalent to 10 years of work).
And, while some people may not qualify for these benefits (those who never worked in their lives and, those who became disabled before completing the "40 quarters"), there are still other people who qualify for benefits. That's why I asked "patrick123" why was he denied benefits.

What really puzzles me is your arrogant attitude stating something like: "Despite me correcting your previous posts, you are still repeating misinformation"...to conclude with this: "I really worry that I am going to miss one of your posts and someone is going to be misled"...

How many times have you "corrected" me here?
If you have evidence to back up that claim, I cordially invite you to provide l-i-n-k-s to such posts.
If you need to oversee me every time I post something to make sure I wouldn't be "misleading" somebody with "misinformation", you are cordially invited to do so.
Just be mindful that even when I have ALS, I don't spend my whole day here 24/7 in these forums because I have hobbies where to spend my precious spare time.

Regards,

NH

I have to go with Nighthawk on this one. I couldn't find any comments to him for miss info, besides which that was kinda a snitty way to point out errors....