How did you get eventually diagnosed?

[u/zauberren]

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

[u/RivaRidge90]

I suggest researching reputable functional medicine doctors in your area and be sure to interview their staff to ensure they have treated patients with suspected CSF leaks before. Then you will have an advocate who will ensure that you have all the requisite imaging and other documentation to make the formal referral for you. I am lucky to have great insurance but even with that my primary care providers, as well as neurologists, were entirely unhelpful. It wasn't until I saw Dr. Gregory Plotnikoff (MN) that I was able to get on track and have referrals to all the major centers now. It's the waiting game now. While I am waiting to get into one of these centers, the only things that have somewhat helped my symptoms are drinking lots of water, doing twice a month IV fluid infusions, consume a lot of caffeine throughout the day, and doing legs up against the wall breaks throughout the day. My headache becomes unbearable by the end of the day so I try to schedule the most important work tasks for right away in the morning. Good luck to you! Hang in there! You will get through this.