That’s a great question, Violet! For all who are reading this, we have a “Good doctors” thread on this forum. If you have doctors who “get it”, please feel free to add yours to the list! Although I have worked with doctors around the U.S. (and oddly, in Italy), I don’t know of any who take Medicare. A trial with Diamox (instead of a lumbar puncture) would be awesome. One patient started a thread on her blog about how she went about getting help for her daughter, and she has some good suggestions. You can find her information here: http://slingsandarrowsofoutrageousfortune.wordpress.com/diamox-pointers/
Thanks for the link. If only I could get to Italy
I had an LP before I got diagnosed with EDS. I don’t believe it made me any worse (even temporarily). Which in itself may be a sign I had a leak before the LP. My pressure was very low. I’ll try to avoid another LP, in any case.
I will be trialing Diamox.