Old 02-13-2007, 07:17 AM #1 (permalink)
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Default How long to live after diagnosis?

What is the average length of time that a ALS patient lives after he/she has been diagnosed as having ALS? I recently read of two cases where it was only months after being diagnosed that these people died from ALS. Do people ever live two, three or more years after they've been diagnosed? What's the longest anyone here has had ALS?
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Old 02-13-2007, 07:22 AM #2 (permalink)
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GWB -

I met a guy at our ALS Clinic who was diagnosed 15 years ago and was walking with the aid of a cane.

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Old 02-13-2007, 12:14 PM #3 (permalink)
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GWB they say 2-5 years after diagnosis but some go after 6 months and some after 6 years and the two average out in the 2-5 year group.my friend started symptoms 1992 was diagnosed in 94 can still eat and talk and use computer but is using wheelchair. bogey
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Old 02-13-2007, 01:15 PM #4 (permalink)
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Default How Long?

Quote from Dr. Neil Cashman - "80% of those with ALS die within 5 years. My record with an ALS patient was 33 years. Some patients are turtles and some are rabbits, referring to life expentancy.".....................ruby from vancouver (surrey)
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Old 02-13-2007, 02:16 PM #5 (permalink)
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I think we have 2 on here that were diagnosed in 1991. I was diagnosed Oct. 03 and still upright walking with a walker and eating fine. We have had 2 on here this past couple of months that have lasted only 5 to 12 months. No telling for sure how long you will have so make the best of each day.
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Old 02-13-2007, 02:49 PM #6 (permalink)
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read a post on average after diagnosed by a group in texas 1986-96 was3.3 years from 1996-06 was4.4 years go figure?
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Old 02-13-2007, 04:52 PM #7 (permalink)
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you never know how long you will have, so please take advantage of every day you have. My mother just passed away from this, 11 days after her diagnosis.
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Old 02-13-2007, 05:04 PM #8 (permalink)
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What the doctors don't tell you when quoting those lifetime averages, is that people who choose life extending measures like a ventilator are not included in the calculation. How long you live is up to you. If you can adapt to this new way of living and build a meaningful life for yourself, it is entirely possible to go on for much longer and enjoy it. The Astro-Physicist Stephen Hawking has lived 40 years with ALS.

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Old 02-13-2007, 06:33 PM #9 (permalink)
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Thanks to all of you who responded to my question. I am really amazed at the wide range of time people live from the time of their ALS diagnosis. All of you gave me some very good information and input on this and I really appreciate it. I am waiting for the ALS clinic to call me for my appointment. I don't know if I have this disease or not but I do experience many of the symptoms, not to mention my dad died of ALS 20 years ago. Hopefully, I will have some answers soon. In the mean time, it is good to know there are folks like you who I can turn to for answers and support. Thanks again to each one of you!
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Old 02-13-2007, 06:35 PM #10 (permalink)
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Gwb, I've had ALS for over 7 years now and I can still do most anything I want to. I have muscle deterioration in my right hand, arm, neck, and shoulder but I can still use them. May God bless you and don't worry about how long you have just try to live life to the fullest every day. Howdy
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Old 05-25-2007, 11:42 AM #11 (permalink)
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It would be nice to have some diagnostic tool to measure progression rates. There must be certain reasons why some people live longer and others deteriorate faster. Findings these markers, however, is the problem. Howdy, for example, has lived 7 years with this diagnosis and apparently only has one limb involvement and can still use the limb after 7 years!
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Old 05-25-2007, 04:42 PM #12 (permalink)
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Default Stephen Hawking/ Four Decades of ALS and still going

This is an amazing story: Stephen Hawking.

http://www.hawking.org.uk/

We can't give up just yet. I ask my brother everytime I leave from visiting him, What prescription do we need today, he replies: Will and Attitude. I have him trained.


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Old 02-05-2009, 04:17 AM #13 (permalink)
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Post Ignore the life-span averages

It is ridiculous and mean for any doctor to say that you will live for only 2-5 years. My first diagnosing doctor told me that and expectedly, I was utterly devestated. But then I started researching Als more on sites such as these, and started realizing that many patients live up to 10 years or more, especially if they opt for a trache and vent. Als patient, Charlie Wedemeyer, has lived on a trache and vent for more than two decades. Plus, with the way research is advancing, new treatments to significantly slow down the disease are probably not far away.
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Old 02-05-2009, 09:19 AM #14 (permalink)
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Quote:
Originally Posted by GWB View Post
What is the average length of time that a ALS patient lives after he/she has been diagnosed as having ALS? I recently read of two cases where it was only months after being diagnosed that these people died from ALS. Do people ever live two, three or more years after they've been diagnosed? What's the longest anyone here has had ALS?
GWB, as you can see from the responses, this grisly statistic varies widely. I was diagnosed in late 2000; I use a scooter and all my limbs are affected but I still drive, work, breathe unaided and can talk reasonably clearly. Progression rates vary widely between individuals but are pretty constant for each person. If you track your own progression monthly for a year, you will have a pretty good idea where you are headed. Here's a site where you can calculate your current status using a widely used metric, the ALSFRS (ALS functional rating scale). Actually there are two scales; in addition to the regular one, there is a modified version (ALSFRS-R) that measures your respiratory ability as well.
ALSFRS site: http://www.outcomes-umassmed.org/ALS/alsscale.cfm
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Old 02-06-2009, 02:08 PM #15 (permalink)
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Just a thought ...

One reason for apparent differences in "survival" (hate that word ... much prefer "living") after diagnosed may be that patients are diagnosed at different stages of the disease. Looking back, I know there were emotional/behavioral changes that could have been the start of FTD (and ALS) 10 years ago. I also had baffling physical episodes that were never explained 2 and 4 years before the start of symptoms that I paid any attention to. I date the start of ALS with when my slurred speech started, but I'm pretty sure there were things going on before that that I didn't consider "symptoms" of anything ... such as long, uncontrolable bouts of extreme yawning, etc., which were very embarrasing at work!

Also, with cancers there are slow progression types and fast progression types, so I imagine it is the same with MNDs, since there is such a large variation in how we all present. There must be reasons for the variations, and understanding them will come from research.
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