Second Opinion Soon, Any Advice?

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Blondrea

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Hello. My partner of ten years was diagnosed with ALS a few months ago. This was at UCLA. We were finally able to schedule a second opinion at Cedars Sinai. It is happening next Wednesday. I am terrified. Though I realize the chances of its being something else are remote, it is the only hope I have. And I am so scared to lose it. Did anyone else feel this way? Any advice? Did anyone get a second opinion in which the doctor decided it wasn't ALS? Any insights would be greatly appreciated. Thank you.

Andrea, Santa Monica, CA
 

Nikki J

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One always hopes for a different answer. So very normal. Has it happened? Certainly. If the first diagnosis came from a neuromuscular doctor not often though. It is quite common though for the second opinion to say one more thing to check to be sure

How to prepare? I expect you have had his records sent. Get another copy to have with you in case something went astray. Familiarize yourselves with the test results and exam findings so you know what the second opinion is looking at.
Make your lists. If there are issues you wonder about that are part of your hope it is something else. Ask. If you want to know why x condition is ruled out ask.
I know you were unhappy with the other neuro. If this is going to be your new neuro find out about clinic and contacts
Before you go check on the clinical trials site to see if there are trials there to ask about.
Good luck
 

Blondrea

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Thank you, Nikki. Very helpful.
 

chally

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good luck w/ 2nd opinion. i just today started the ball rolling for a 2nd opinion thru va so your concerns where timely for me also so thanks and keep posting. love chally
 

Green Queen

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Hey Andrea, my heart breaks for you. We are waiting on another opinion, and my husband Wayne has the same anxiety as you, so what you are experiencing is very normal.
Sometimes, not all the time, but sometimes, the burden of not being sure can be more stressful and painful than getting a diagnosis.
Cling to your hope, that's very important for you, but please please please, allow some of your thoughts to drift to the possibility they are going to give you the same answer. Crash landings on the other side won't hurt as much, if you have allowed for many possibilities.
I so wish I could give you a big hug...please know that everyone here is hoping and praying for the best possible outcome for you both, and we are with you all the way.
Take care Andrea, God bless, Janelle xxxxxx
 

MaxEidswick

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>We were finally able to schedule a second opinion at Cedars Sinai. It is happening next Wednesday. I am terrified.

lots of options. beware of anxiety! try volunteering or helping some while you wait. stay off the internet :). go look at puppies!
 

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cmropen

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It's great that you're going for a second opinion. The best thing you can do for your husband and family is be proactive in his care, and making sure you get the right diagnosis is key to then getting him the best treatment.

I thought it might be helpful to pass along some resources to help with navigating getting a second opinion since often times people don't where to start, how to go about or what to ask.

These focus on starting the conversation, finding a doctor, as well as exploring treatment and testing options. Knowing the questions to ask and how to communicate confidently may be hugely beneficial. Hope these are helpful!

ALS Association: Second Opinion FAQs
ALS Association: How To Go About Getting a Second Opinion
Talking with Your Doctor – MedlinePlus.gov
Explore Your Treatment Options – Agency for Healthcare Research & Quality. This is an interactive page that provides a lot of great resources.
How to Get A Second Opinion (2008) – Womenshealth.gov
Questions to Ask Your Doctor – Agency for Healthcare Research & Quality
 
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Blondrea

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I am sitting at my desk crying, because I am so touched by everyone's generosity. A kinder, more thoughtful group of people I will never find.

Thank you from the bottom of my heart.

Andrea
 

Green Queen

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G'day Andrea
Been thinking about you...
When you or Michael are ready, are you able to let us know about the second opinion?
Hoping it wasn't too difficult for you.
God bless, Janelle x
 

Blondrea

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Hello, Janelle. Always lovely to hear from you. Our second opinion is next Wednesday. We are meeting with the head of the ALS clinic at Cedars-Sinai in Los Angeles. We are under the impression that we will be getting a second opinion, but since this is his first visit there, it might just be an initial consultation. (I realize it is odd that we aren't certain if this is a second-opinion appointment!) We've been trying for almost two months to have records transferred from UCLA to Cedars, so hopefully they will finally be there when we arrive. I will definitely keep you updated. Your advice was very helpful, by the way. I am hanging on to some hope, but am also making room for the very possible diagnosis scenario. But, I'm pretty sure there will be a big crash landing anyway. Thank you for being such a loving, supportive presence in our lives.
Andrea
 

lgelb

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Andrea,
Since the records only need to travel w/ in the same city, I would go over to UCLA and grab them (naturally, call first, fax any necessary releases if he doesn't want to go, any films can go on disk or be e-mailed, copies of notes, labs, etc. can go into the file folder you'll want for yourself anyway, and sometimes can be transferred within an EMR) rather than hope for the best. Murphy's law holds pretty strongly when it comes to medical records. That way, you'll make the most of the visit and get a definitive 2nd opinion sooner.

If you get records in advance, you can ask Cedars if they could use them before the visit, but if they say yes, keep your own copy before you give up anything. But if you have to bring them the day of, no big deal. They're used to reviewing on the fly.

Since you asked for a second opinion, they should do the exam, review what you bring, then state if they are prepared to (1) agree w/ UCLA (2) probably agree but want to do some new/repeat tests or (3) not want to render an opinion pending further testing. It is unlikely that you will get a "disagree" w/o further testing.
 

bear1973

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Andrea,
I went through this process in May waiting for a second opinion. Part of me wanted to know, and part of me didn't want to know. I've heard that about 10% of cases are the wrong diagnosis....what I did was prepare for the worst and hope for the best....I knew that almost certainly it was those 3 dreaded letters so I wasn't too shocked to hear it confirmed....try to distract yourself over the next few days as hard as it may be... God Bless
 

LifeEnthusiast

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Cling to your hope, that's very important for you, but please please please, allow some of your thoughts to drift to the possibility they are going to give you the same answer. Crash landings on the other side won't hurt as much, if you have allowed for many possibilities.

So true.

If you look at my post history, you'll see I'm clinging on to a third opinion knowing darn well it is unlikely. But a dreamer always has hope.

Bear was right too. Hope for the best, but prepare for the worst.

Sending you and your partner big hugs and positive thoughts for next Wednesday.

Feel the love.

Cee
 

Blondrea

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Thank you everyone, so much for your advice. It is very, very much appreciated.
 

Blondrea

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We just got back from Cedars Sinai. Dr. Baloh, one of the directors of the ALS clinic, agreed with UCLA's diagnosis. He is testing for copper deficiency, and is going to do another EMG/NCS. But, looks like we are 99.9999999% of the way to undeniable diagnosis. I guess I am having a hard time believing it because Michael seems fine. His hands are giving him trouble, but his balance, breathing, stamina, etc., just seem so normal. I thought I would be devastated. In fact, I am numb.
Andrea
 
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