So Cal Pulmonary Spec / Anyone else with this problem?

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Hi,

Does anyone know of a neurologist or pulmonary specialist in Southern California

who has seen a CMT patient with diaphragm weakness?

I went to my pulmonary specialist today. I had called ahead to request the

pulmonary function tests according to Crabtree's recommendations, MIP/MEP

sitting & lying down. The respiratory therapist was very accommodating,

including bringing an air mattress from home so I could lie down comfortably for

the tests, since it's not something they normally do. As I suspected, the

supine tests do confirm that I have significant diaphragm weakness.

Surprisingly, however, the doctor was dismissive of the results because all of

the other (his usual) tests were within normal limits. 's site warned that

this my happen.

So, I'd like to find a physician who has seen this before, preferably in

Southern California. I'm aware of the new CMT Center of Excellence that just

opened at Cedars-Sinai, but when I looked them up online they don't have a

pulmonary specialist on their team (or pain specialist either...by the way).

Maybe they one waiting in the wings. I'll call tomorrow to confirm, but if

anyone has additional information, I'd welcome it.

Also, I'd really love to speak directly with someone who is being treated for

diaphragm weakness. I also have early signs of heart valve weakness. From what

I've read, these are related, correct?

Any information would be greatly appreciated.

Thanks,