Old 08-17-2015, 09:45 AM #1 (permalink)
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Default What question to ask Neurologist.

I see a local neurologist and he states I have neuromuscular problem but does no think it is ALS. He refers me to Mayo in Rochester. After four days of tests at Mayo, the Mayo dr. diagnosis me with probable ALS. I know that is pretty dialed in. In my notes the Neurologist states "I don't know what this is, I am diagnosing it as ALS, because I don't know what else it could be." In one month I am scheduled to go back to Mayo for follow up, What questions do I ask this neurologist?
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Old 08-17-2015, 10:31 AM #2 (permalink)
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Default Re: What question to ask Neurologist.

Wow. I would probably ask to see his degree!
I'm still on the merry go round for a diagnosis, if a Neuro isn't sure, I get referred on to another Neuro.
There are so many people on this forum who will give you great advice, but if it were me, and I have ditched doctors believe me, I wouldn't go back to Mayo, or at least demand to see an ALS specialist there.
All the best for a diagnosis.
God bless, Janelle x
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Old 08-17-2015, 04:33 PM #3 (permalink)
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Default Re: What question to ask Neurologist.

I think Mayo probably gave you the right doctor. They have a fantastic reputation for hiring only the best and giving them all the support they need. What was the doctor's name?

In ALS, there are levels of diagnosis. In order, they are: Suspected ALS, Possible ALS, Probable ALS, and Confirmed ALS. A diagnosis of "Probable ALS" is good enough for Social Security to take expedited action to begin your disability benefits and Medicare.

ALS is a diagnosis of exclusion. Since there is no direct test for ALS, they have to exclude everything else. From your post, it appears your doctor diagnosed "Probable ALS".

So first, ask the Mayo doc to write a letter of diagnosis. You can take this to Social Security to start SSDI benefits and Medicare.

Surely, Mayo must have done an EMG exam. Ask for the results of that.

Did you serve in the military on active duty for at least 90 days?

Finally, as with any terminal diagnosis, I would get another opinion from a neurologist who specializes in ALS.
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Old 08-17-2015, 07:16 PM #4 (permalink)
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Default Re: What question to ask Neurologist.

Atsugi
I was at Mayo in Rochester, MN. The dr gave me the diagnosis because of muscle wasting and weakness especially in my right leg, plus the emg showed abnormalities. I had read the importance about getting a second opinion, and there was a helpful post about asking for a second opinions. Now my question is , where do you go for a second opinion after Mayo? It seams a number of local neurologist refer their patients on to Mayo.
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Old 08-17-2015, 10:10 PM #5 (permalink)
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Default Re: What question to ask Neurologist.

You might inquire into the U of Chicago.
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Old 08-17-2015, 10:31 PM #6 (permalink)
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Default Re: What question to ask Neurologist.

If you can travel Duke. , hopkins or mass General. People travel from all over to be seen at all these places. I strongly recommend MGH
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Old 08-17-2015, 10:58 PM #7 (permalink)
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Default Re: What question to ask Neurologist.

Indeed, if you can travel, I recommend the neurologist we used, Dr Kevin Boylan at the Mayo in Jacksonville, Florida.
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Old 08-20-2015, 07:22 AM #8 (permalink)
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Default Re: What question to ask Neurologist.

Thank you for the information. I am going to keep this appointment, so they can compare to results from my earlier appointment. It is scary not having a confirmed diagnosis. I guess I will take people's advice and Hope for the best and prepare for the worse.
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