I'm having multiple odd episodes that are keeping me undiagnosed. Help

@pearlbaby7 I'm really so to hear that. Glad it's been caught though. Yeah, I have been to so many doctors and had so many tests that I have an excel spreadsheet in a google doc that I can show new doctors. Seems kind of over the top but I've realized that when you hand a doctor a stack full of physical papers, they skim through it but you can tell they get lost. Mine is actually organized by category like "Parasites/Stool/Bacteria", "Thyroid", "Vitamins". etc. This way it's all right there and neat.

@contentandwell Yeah that seems to be the case with many people. They see multiple doctors and then that one magic person appears and finds the missing link. I have yet to find that magical person but I'm really glad you were diagnosed. It's always encouraging to hear the success stories. Was your liver causing neurological issues? If so can you be more specific of what was affecting you? Thank you for your concern, I truly appreciate it 🙂

@contentandwell The University of Indiana is about 3 hours south of me. However I don't have any tests that raise concern other than the Hepatic Echo that says Parenchymal liver disease but it's broad. My AST and ALT are normal and I'm not jaundice. There's not much to go on to get me through the door.

@pearlbaby7 I'm really so to hear that. Glad it's been caught though. Yeah, I have been to so many doctors and had so many tests that I have an excel spreadsheet in a google doc that I can show new doctors. Seems kind of over the top but I've realized that when you hand a doctor a stack full of physical papers, they skim through it but you can tell they get lost. Mine is actually organized by category like "Parasites/Stool/Bacteria", "Thyroid", "Vitamins". etc. This way it's all right there and neat.

@johnwes5819 John, I had non-alcoholic cirrhosis, also called NASH cirrhosis and caused by fatty liver that has not been diagnosed. Apparently, I had it for many years (10 was suggested by the hepatologist) before it presented itself. I had some other symptoms, like a low platelet count, shaky hands, and others that seemed unrelated to anything. Then I suddenly had an episode of confusion. The PCP I had at the time called me on the phone and told me she thought I had Alzheimer's! After that first one I had more, every few weeks or so. They thought these episodes were a neurological problem, thus the neurologist involvement. He literally scoffed at the idea of Alzheimer's.
It took almost a year and a half after the first episode of confusion before I was finally diagnosed. The confusion episodes are called hepatic encephalopathy (HE). By that time I had a new PCP but he too did not diagnose the problem despite multiple symptoms that I discovered afterward were all typical of cirrhosis. A few of these episodes put me in the hospital and that was when the neurologist suggested liver, so they did an ammonia test and sure enough, my ammonia level was high. When you have cirrhosis your liver is not processing things as it should. Normally it would filter out the ammonia but when it does not, it can travel to your brain and cause HE.

Please feel free to ask any other questions you might have.
JK

Your experience reminded me of the story of Susannah Cahalan in the movie "Brain on Fire". While the symptoms aren't the same, it took a doctor who looked for the rare "zebra" diagnosis to diagnose her with anti-NMDA receptor encephalitis. It literally saved her life. Prior to that diagnosis she was at one point told she was schizophrenic and put into a psych ward. I'm not saying her disease is causing your symptoms, but to point out that getting to a facility like Mayo that have all specialties under one roof and physicians who will work together and look outside the box for rare maladies could allow the puzzle pieces to be put together. Good luck and God bless. I hope you have a diagnosis soon.

has anyone done the cortisol and adrenal function testing? If those are normal - then you can find yourself qualifying for a different set of doctors - but I've for SURE get those done. there is a "stim test" that takes a baseline level of cortisol and then following an injection of something (they never told me what it was) they will take more blood tests to measure cortisol again. Check it out.

These symptoms are incredibly alarming! Are you in an area where alternative medicine is accepted? Alternative doctor? I have had very positive results with a good accuouncturist. Don’t go for fru fru aromas and music and incense. There is real scientific proof that it works if the accuouncturist knows what they’re doing. Also, get checked for Lymes disease.

Let me reiterate scout acupuncture, however. It works and it’s non invasive and non prohibitively priced. The worst that can happen is it doesn’t work, but you’re not adding anything to your body.

As you can, moderate exercise and fresh air - both of which can be accomplished by taking a walk everyday.

You have serious symptoms that should not be brushed off by any doctor.

I wish you luck and keep reaching out.