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Old 10-02-2006, 04:28 PM   #1 (permalink)
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Hello,

I am new to your site.

One of my closest friend's was diagnosed a few days ago with ALS. She's been experiencing ascending paralysis, weakness in her legs for several weeks now, and has been tested for so many different things.

I have no experience with ALS, but faced cancer myself, and found that public forums often offered me help I couldn't get from my doctors.

I've been researching online for her, since her computer access is limited.

I would really like her to see a specialist in ALS, at least for a second opinion, and advice. SO, what I'm hoping for is advice on the best ALS doctors and how to find them.

She's currently living in Oregon, but will likely be moving to North Idaho soon, so I'm searching for someone in Oregon, Washington, Idaho or Western Montana.

I'd appreciate any recommendations you all could give, or ideas on how I can find out which doctors in our area might be specialists.

thank you

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Old 10-02-2006, 04:47 PM   #2 (permalink)
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Hi friend. Welcome to our group. Sorry to hear about your friend. We have a few members from Oregon and Washington so it may take a couple of days for them to read your message and reply so don't give up hope. If you have any other questions just ask. AL.
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Old 10-02-2006, 05:38 PM   #3 (permalink)
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Virginia Mason ALS clinic

https://www.virginiamason.org/body.cfm?id=714

http://www.alsa.org/news/article.cfm?id=966
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Old 10-03-2006, 03:17 PM   #4 (permalink)
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Hi All,
Here is a follow up thought regarding ALS specialists & 2nd/3rd opinions:

Does it make more sense to go to an ALS clinc or to someplace that specalized in neurology overall for 2nd or 3rd opinion?

The experience that my husband had was 1st neuro said PBP, probable ALS. 2nd neuro at ALS center looked at the chart, did a neuro exam and agreed. I did not feel like he looked for alternative diagnosis, and just confirmed that the 1st neuro had not messed up totally. It seems that by going to ALS center for a confirmed diagnosed that they will LOOK for ALS and not for alternative explanations.

So.....we are considering a totally objective 3rd opinion at some place that is known for overall neurology, not just ALS.

Does it make any sense or am I just paranoid?

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Old 10-04-2006, 02:55 AM   #5 (permalink)
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No I don't think you are being paranoid. For my fourth opinion my Neuro (ALS Specialist) sent me to a Clinical Diagnostician Neurologist specializing in Neurological disorders of all types. He did all the tests himself again rather than just looking at the other 3 sets and came to his own conclusion. He did basically agree with the guy who sent me there. I'd go for the independent opinion. May as well have another opinion. AL.
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Old 10-04-2006, 12:04 PM   #6 (permalink)
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Thanks Al! My intuition tells me that that this is the right thing to do.

Now if we can just get the insurance company to agree.......

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advice, als, diagnosed, friend, paralysis, second opinion, weakness, wes


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