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Having a good neurologist is key to figuring things out and getting good care.
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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!
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Since you now have breathing problems, you should really go see a pulmonologist.
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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