Old 07-03-2006, 02:38 AM #1 (permalink)
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Default When to stop looking for another diagnosed?

OK, my hubby has heard from 2 neuros that he has MND (PBP to be specific).

The first neuro is the local guy who diagnoses 8 or 9 cases of ALS a year.
The 2nd was the head of neurology at ALS clinic at the University of Colorado.

We are thinking about going to Mayo Clinic to ask for a 3rd opinion.

My questions:
Does it even make sense to get a 3rd opinion?
Are we wasting our time and money & should we just get on with it?
At what point will we (if ever) stop saying "He has been diagnosed with MND" and move to "He has MND"?
How many opinions did you all go to before being able to accept that MND is your future?
What has been your experience with Mayo as a 2nd or 3rd opinion?

We just can't accept the fact yet (when will we know it's a fact?).

Thanks in advance for any advice you might have for us.
COlisa

P.S. Thanks for this forum! I do not know what I would do without it. I have thousands of questions. Be prepared to hear alot from me.
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Old 07-03-2006, 09:47 AM #2 (permalink)
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Colisa,

Hello, my husband and I asked for three opinions. I believe everyone is different. Some people accept before others. You should do what feels right for you and your husband. If it means seeing three or four then you should do that. Keep hope in your heart. It is okay to keep seeking if you feel it is what you both want to do. It is very hard to accept this illness. Even though my husband and I had three opinions we still have doubt in our minds, we always will because it is shocking to accept this kind of diagnosis. You will know in your hearts when the right time will be to no longer search for another opinion. Do what you both feel is right for you. I am sorry you are going through this, it is truly heartbreaking. Keep hope though, always hold onto a cure.

Sandy.
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Old 07-03-2006, 03:58 PM #3 (permalink)
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I think anyone who has been diagnosed with ALS should have a second opinion from an ALS center (even if the first opinion was also from an ALS center). As for whether there's any good reason for continuing to pursue a different diagnosis, that depends on each PALS's individual circumstances. You've read about ALS symptoms and the diagnostic process. Is there any reason to believe that your husband's situation falls sufficiently outside the norm (in terms of tests done or symptoms) that ALS just doesn't seem to fit? Do you have any reservations about the diagnostic skills of the doctors who have offered previous diagnoses? If the answer to both of those questions is no, I'd think a third opinion is a waste of time and money.
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Old 07-04-2006, 10:31 AM #4 (permalink)
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Post I'm sorry to have to welcome you here

But glad you found us. We have gone thru what you are facing and I know it is very difficult. Couple of thought you might want to share is what tests did they make their diagnosis upon. I went thru 3 docs and every possible test before I would accept it was the only choice. If you go for another opinion ask if their are any additional tests to rule out anything else.
May God bless and I wish you both the best you can possibly have facing the unknown.
AL

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Old 07-04-2006, 01:24 PM #5 (permalink)
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Thanks for all the responses.

The only tests that I can find that have not been done are muscle biopsy & test for heavy metals. Everything else (chest xray, MRIs, lumbar puncture, lots of blood work) have ruled out stroke, brain tumor, B12 deficiency, Myasthenia Gravis, Multiple Sclerosis, Lupus, Kennedy's disease, Lyme, Lambert-Eaton Myasthenic Syndrome, Sjogrens.

When asked the neuros they said with hubby's symptoms muscle biopsy would not seem useful & muscle biopsy is unpleasant. Honestly, what could be more unpleasant than the current diagnosed though!

For heavy metals, there is no history of him being around heavy metals, so they did not do the test.

At this point, I will insist on the 2 additional tests will get them done before going for 3rd opinion. . What is there to lose?

Can you tell me how bad the muscle biopsy might be? It can't possibly be worse than EMG and spinal tap can it?

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Old 07-04-2006, 07:31 PM #6 (permalink)
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Lisa
You've already been given some excellent advice and I wish that I could tell you what you want to hear, but all I can offer is some information. Take it for what it's worth.

MUSCLE AND NERVE BIOPSY IN DIAGNOSIS OF ALS
http://www.mdausa.org/publications/a...1.html#shebert

Often it is only after the symptoms have progressed and the patient shows conclusive signs and symptoms of the disease that a physician can reach a diagnosis of "definite" ALS...
Why is it important to get a second opinion?
http://www.alsa.org/patient/opinion.cfm

Hope this helps

Pat
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