Undiagnosed and unsure if it's all in my head

I'm so sorry you're going through this! I am dealing with some of your symptoms as well! It doesn't sound to me like it's all in your head. Keep pushing and keep searching until you find a doctor that will really listen to you and willing to keep looking!! I am praying for you! Don't give up!

@raliza The doctors before my mom passed on (She was 76 and and in pain-after two weeks in the hospital ) was told by doctors that the stomach pains she was suffering from were in her head- sent her home--Fast forward 6 months , my Sister took her to the Mayo Clinic in Mn. There Doctors found a tumor growing out of her pancreas into her stomach and the bottom of her stomach was black because it was dead where the tumor penetrated it. They operated successfully but my mom didn't have the strength to pull through and ended up getting sepsis. This still eats at me.

@sandy8043
Thank you so much for the suggestion. I will definitely ask my doctors if they will considering running that for me. Are your symptoms chronic? Mine are more acute and kind of inconsistent in their presence, so unsure if it lines up with that. Were you also checked for MS?

@grass16 Some years later my Neuro at the time saw a brain lesion on an MRI and added MS to my list. More recently my new Neuro looked at that MRI and my current ones and says he doesn't think they are MS. 20 years have passed and the body feels the same. At this point a diagnosis is not really important to me.

Well, if you have fluid dripping from your nose it’s got to be coming from somewhere?!
Is it constant? Do you have allergies? Can you feel it in the back of your throat? I have that almost constantly but I know it’s my multiple allergies.

I just feel badly that you are at the point where you begin to doubt yourself - I was there many years ago because I was reassured I was normal but yet I just knew something wasn’t right.

I hope you figure this out! Thinking you are going crazy is not a good way to feel. 🤔

Do you keep a daily journal? Maybe there’s something there that would be a clue? It just helped me see the bigger picture and did help me in pinpointing my reasons for dismissing the “simple” answer the first 2 doctors were trying to tag me with.

@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.

@rashida I live pretty far from there and doing follow-ups while in college might be a struggle. I'll ask to possibly reach out to them if my upcoming Duke appointment doesn't work,

@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!

@grass16 where do you live? It seems like Cleveland Clinic has locations in several States so there may be a location close(r) to you …?