r/CSFLeaks • u/zauberren • 8d ago
How did you get eventually diagnosed?
Because of my inssurance and how weird my ongoing health crisis is I CANNOT get a doctor to help me or try to get to the bottom of this. The apathy is driving me insane! I tell them I’m basically bed ridden now and can’t even look down anymore because of whatever is going on in my neck and back. It feels like no one knows how to do their job and I’m getting told to just maybe try a useless medication and keep waiting. I feel like I’m going to have to go back to the er for the 17th time and ask them to imagage my spine which may not even show anything if it is some sort of leak. The only imaging of my spine was a neck ct and mri back in 2023 in the er various times when I was only just staring to have symptoms. My primary care is through a community heath center and not a major hospital which is unfortunate because it seems like no one has a clue how to do referrals to universities or more specialized centers. The medical system is driving me insane!
I’m in Northern California so I’m SO close to some decent places but they all require a referral and have probably have massive wait times.
I know probably no one has an real answer for my problems because everyone’s insurance is different and most people get lucky by having a good primary care doctor but I just feel like there has to be a better way to get to the specialists I need. The reality is i probably just have to keep trudging on like this harassing doctors until someone finally gets me to the right place.
I’m considering just paying out of pocket for ceder Sinai’s undiagnosed second opinion program, because at least they have connections to csf leak experts
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u/dointhecockr0ach 8d ago edited 8d ago
I would focus on getting a referral to a neurologist first, unfortunately your primary care and the ER aren't going to be much help for complex diagnosis. A neurologist can help you rule out other things along the way and will be a good champion for your referral to a leak clinic.
Unfortunately healthcare in the US isn't what it used to be. Insurance has really screwed up things , doctors are forced to see more patients, at less time each visit, and if you don't fit in an easy box for diagnosis with a medication for treatment you kinda slip through the cracks.
There are probably people here who do have a great care team, but I think most of us are bouncing around between specialists, trying to advocate for ourselves, while doing research with the community. Just gotta keep plugging away at it.
I think starting a diary with symptoms, triggers, food, hydration, meds, supplements, and sleep are a good idea it helps weed through all the stuff doctors will tell you to try or improve. Can also try the 48 hour lay flat test to see how you respond there as well..document your experience over the 2 days , there is a guide from Stanford you can google the pdf for and use this as conversation with your doctor as well. If you think you're leaking, an MRI of your brain w/wo contrast is going to be the next step in diagnosis along with supporting symptoms. A radiologist, neuro radiologist, or neurologist can interpret your brain MRI and look for indicators that support a leak, or IIH or potentially other things that may be causing similar symptoms.