Old 04-11-2017, 12:58 PM #1 (permalink)
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Default newly diagnosed

Update!

I went to the University Hospital for a second Nerve Conduct Study and EMG.

NCS: The doctor tested both arms, hands, wrists and my right leg.

EMG: The doctor tested my right arm, hand, as well as my left arm, right leg and back.

While she said she tried everything to find symptoms that mimic ALS, in the end she couldn't and therefore diagnosed me with the disease and started me immediately on riluzole (Rilutek).

My wife, our families and I are devastated by trying to remain positive. I have scheduled a second appointment (second opinion) for later this month in Phoenix, AZ but I'm not getting my hopes up. Thanks to everyone who has sent out support and positive vibes. As you all know, this is a very bitter pill to swallow but I"m trying to stay upbeat for the sake of my young children.
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Old 04-11-2017, 04:47 PM #2 (permalink)
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Default Re: newly diagnosed

Very sorry to hear the news, Santa Fe. You are doing the right thing by getting a second opinion, of course. If the worst is confirmed, give yourself time to come to terms and decide the party line for the kids. We're here whenever you need us.

Best,
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Old 04-11-2017, 05:45 PM #3 (permalink)
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Default Re: newly diagnosed

So very sorry to see this happen. I am really shocked. Very sorry. We're all here for you, whenever, for whatever reason. Feel free to write. I'm hoping your second opinion will be better news.
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Old 04-11-2017, 05:52 PM #4 (permalink)
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Many hugs to you.

Editing to add--- I also have young kids: 4, 6, and 8. For me that's the hardest part. Anyway, I can definitely empathize with that side of it. If you ever want to talk about that component I'm here (and I'm sure many others are also) to listen and empathize.
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Old 04-11-2017, 06:08 PM #5 (permalink)
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So sorry to hear of your dx. We are here for you.
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Old 04-11-2017, 07:21 PM #6 (permalink)
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Sorry for you to have to join us here... but glad that you found us.

My best!

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Old 04-11-2017, 08:47 PM #7 (permalink)
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We are here for you.
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Old 04-12-2017, 02:17 PM #8 (permalink)
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very sorry you have received this diagnosis and joined the most elite club here
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Old 04-12-2017, 07:28 PM #9 (permalink)
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I moved from university hospital Madison and got a second option from milwakee but I still have bulbar als. Just a progressive approach.
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Old 04-13-2017, 10:58 AM #10 (permalink)
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Thank you everybody for your encouraging messages of optimism and hope. I will get my second opinion in Phoenix on April 24. I appreciate all who have read my post(s) and reached out to me. Have a great Easter/Passover/Tax Day / mid-April
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Old 04-19-2017, 01:15 PM #11 (permalink)
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Hi, all--

I''m not sure if this is the appropriate place to ask this question but I will.

What are everybody's thoughts on Rilutek (riluzole)? The neurologist has prescribed it to me but I am a person who hates, hates, hates taking meds. Do the benefits outweigh the negative effects/complications such as liver damage?
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Old 04-19-2017, 01:43 PM #12 (permalink)
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I'll tell you what I think I know from reading and listening.

If a person starts taking R. regularly very early in the disease, then it is possible that there will be a minor extension of life.
What kind of life?
The way I've seen it explained is that the benefit is distributed throughout the remaining life. So, for example, if a patient were going to live 36 months, but she took R. regularly from the beginning, then that patient could expect to live, say, 42 months. Instead of 14 months walking, 20 months wheelchair, and 2 months bedbound before dying, they would see 16 walking, 23 wheelchair, and 3 months bedbound before dying.

Hope that helps.
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Old 04-19-2017, 02:03 PM #13 (permalink)
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Default Re: newly diagnosed

Taking riluzole is supposed to extend life by 10 percent. As Mike says it depends on progression rate how long that may be. Slow progressors get more out of it. I have a friend who at ten years still has only one limb affected. That person is hopefully getting a lot of time from riluzole.

It works best if you start taking it early according to my doctors. Someone I know was told very early and you get 25 percent benefit. I think this is anecdotal rather than research but not sure.

Some people tolerate it better than others. I felt queasy for about three weeks then was ok. My liver tests have stayed rock stable on the lower end of normal after three years

I believe it helps me. You have little kids. Give it a try.

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Old 04-19-2017, 02:35 PM #14 (permalink)
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I'm not sure there is any evidence that shows taking riluzole early will make you bed bound longer. My understanding is that it can slow progression, and if it does then it works best being taken early. Most people stop taking it towards the end anyway.
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Old 04-20-2017, 10:31 AM #15 (permalink)
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I agree with the advice to take it early and see if it works for you.
My PALS tried it but it gave him constant diarrhea and it was just not worth the trade off, so he stopped taking it and his quality of life was better in that sense.
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