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Need a doctor who knows about CSF not draining properly.
Posted: 04 December 2014 01:49 AM   [ Ignore ]  
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Need a doctor who understands we can have too much CSF stuck in our heads (Driscoll Theory).

And is willing to order diagnostic imaging or do treatment that works (not want to use the same old treatments that don’t help us) and takes Medicare.

Please post or message me directly if you know any neuro or other doctor in the US. I will travel.

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I have hEDS, Dysautonomia, mast cell disease. Probable mito, etc. Looking to make friends on a similar journey.

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Posted: 04 December 2014 02:53 PM   [ Ignore ]   [ # 1 ]  
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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/

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 04 December 2014 04:27 PM   [ Ignore ]   [ # 2 ]  
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Dr. Diana - 04 December 2014 02:53 PM

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 smile

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.

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I have hEDS, Dysautonomia, mast cell disease. Probable mito, etc. Looking to make friends on a similar journey.

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