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alice md · 06-26-2011, 12:42 AM

Quote:

Having a good neurologist is key to figuring things out and getting good care.

I fully agree with that.
Although, sometimes having a good one is not enough, and you need an extraordinary one. Which may take a very long time to find!

Quote:

Since you now have breathing problems, you should really go see a pulmonologist.

A pulmonologist with a good understanding of neuromusuclar disease is indispensable, once you have respiratory muscle involvement.
Preferably, also find one that has a good understanding in non-invasive respiratory support, and knows if, when and how to use it.

Also a good GP that can orchestrate it all, is very helpful.

Alice

blondieslp · 06-27-2011, 05:52 AM

Quote:

Originally Posted by alice md

I fully agree with that.
Although, sometimes having a good one is not enough, and you need an extraordinary one. Which may take a very long time to find!

A pulmonologist with a good understanding of neuromusuclar disease is indispensable, once you have respiratory muscle involvement.
Preferably, also find one that has a good understanding in non-invasive respiratory support, and knows if, when and how to use it.

Also a good GP that can orchestrate it all, is very helpful.

Alice

Thanks Alice for all your help! I actually saw someone in Boston but I am not sure how familiar he is with MG. I think I really need to make sure I am dealing with specific Drs. that know as much about it as possible. I will also set up an appt. with my primary although she told me she had only had one or two patients with MG and knows little about it. This is really re-assuring isn't it? blondieslp

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