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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
@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!
Replies to "@grass16 Where do you live again, state or area of country? Soon as you said “tastes..."
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@wisco50
I live in georgia. Yes, they did say this. I got rejected at mayo and I am a duke patient currently. My mom was lots of knowledge due to her own condition, but it's not going anywhere pretty much. The duke is looking some at the possibility of chiari, but they think I wouldn't likely have sudden symptoms like this.
I have a family of doctors, so my mom asks them for advice as well. Thank you, I will keep def keep updated.