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Undiagnosed and unsure if it's all in my head
Brain & Nervous System | Last Active: Apr 6 2:39pm | Replies (44)Comment receiving replies
@wisco50
No allergies, I've never had them. I can taste it in the back of my throat after a leak happens, it's salty. They were considering the probability it might be leaking from the base of my skull due to the chiari.
Thank you so much. I did for some time and have started it back, not much clue to be honest because my symptoms are acute. I feel fine for some days and then terrible on others, but I'll def be journaling multiple times a day.
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@grass16
Where do you live again, state or area of country?
Soon as you said “tastes salty” —> I am not a doctor but I was a RN for >40 years and did take care of neuro patients directly from the OR. You would be best served (maybe someone said this?) by going somewhere like Mayo, Cleveland Clinic,, Johns Hopkins etc where you would have a whole tribe of doctors working together to figure this out and hopefully asap. This just sounds very uncommon and very wrong to not be diagnosed!
If you feel like you and your family can’t get anywhere see if you can find someone to be your patient advocate. I was my own because I had the knowledge to keep pushing. It’s exhausting to do when you don’t feel so it would really be helpful for you - do you know anyone that might help?
Please keep us updated and I wish the best for you!