How to prepare for 3rd opinion consult?

[COlisa]

Hi All,
Dave's appt at UCLA with Dr. Graves is 1 week from today. (Background: Dave has dx of Progressive Bulbar Palsy from 2 neurologists...one was from the ALS center at University of Colo).

I want us to be as prepared as possible for the consult, so want to get some feedback from all of you.

The dr. has all of my husbands medical records & I am taking copies along as well.


What are your experiences from 2nd or 3rd opinion consults?
How best to prepare?
What specific questions should we ask?
Should we insist on re-testing? (my fear is that them missed things the 1st time around)
What shall we expect from the consult?Any insight you can provide would be greatly appreciated!

Cheers,
Lisa

[Al]

I would ask for retesting of EMG and NVC tests. Just reading someone else's results to me does not count as a real consult. Most guys learned the basics of interpreting results so will not differ unless the results differ. If you are going to the trouble of a third opinion you should get new tests. I've had 5 opinions and each guy retested the two tests. The results were slightly different at times and had 2 different diagnosis but still ended up with ALS. Hope you do better.
AL.

[COlisa]

Thanks Al.

Does anybody else have any comments or advice?

Thanks,
Lisa

[liz]

Check with your insurance company before you request specific tests and/or make sure you follow preauthorization procedures so you don't get stuck with a pile of huge medical bills.

Liz

[Omar]

Hey Lisa,

I am really happy that you and Dave are willing to go for a second or third opinion.
But even though redoing all the tests is tiering and taking lots of energy and time, I would advice to redo them. I would also suggest to go to a good neurologist without mentioning anything about ALS, then he will test, check and see. I don't know, the reason I am telling this, is that when I went for a second opinion to Paris, the Neurologist had a quick look to all the tests I did and checked me in 5 min and told me that yes I have ALS.
I do also agree with Liz about checking your insurance company as well, and always keep a positive attitude while waiting.
Good luck

Omar

[Frizzel]

I agree with Omar, Liz and AL. I've had so many tests, retests and doctors look at me and the results still come back to PLS moving into ALS. CHECKING FIRST with your insurance before any specialized tests are done is right on. Steady as you go...

Also, may I suggest to write any questions or concerns or changes that you and Dave see happening down on paper before you go.

Let us know how it goes. Frizzel

[sherry0459]

Lisa and Dave you will be in our thoughts and PRAYERS. Please let us know how it goes. sherry

[Al]

Sorry about that guys. Up here the Government pays for most of the diagnostics for serious illnesses so we forget that some of the others can't just tell the doc you want new tests. They certainly can get expensive.
AL.

[COlisa]

Thanks to all for input & good wishes.

We leave tomorrow for LA. Will post next week with results of the consult.

Cheers,
Lisa