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

@contentandwell I trust my doctor but she, to me, is a small fish in a big pond. I believe she knows things but isn't as up to speed as I would like and this is many many doctors later. I wasn't diagnosed with fatty liver, except one liver doctor saying the parenchymal liver disease found in the ultrasound "could" be fatty liver. The others said it's nothing to worry about, you're good. However, the doctor that did mention "could be fatty", has not made an effort to move forward and he made it sound like a biopsy is a waste of time and then there is bleeding potentially in the future. Not sure why but it was brushed under the rug.

I feel your pain. I'm going through this myself. I freak out. I feel like loosing the battle but also know that it's our mind. Only one that can control its us . Dont let it control you. Stay positive.

A couple of quick thoughts: Are you taking ANY prescription or over-the-counter medications? I am appalled at how many doctors ignore unusual or even known side effects of drugs ( for example, proton pump inhibitors and even H2 blockers can have a host of side effects - i'm not suggesting that's your problem but I would certainly first want to know any medication, even OTC, you are taking). Have you been tested for parasites? (I have seen normal tests in someone had strange symptoms that ended up being a rare intestinal parasite.) My only other quick thought is to ask if you have received autonomic testing (tilt table) for dysautonomia, which can cause many of your symptoms.

I suffer from anxiety and have had some of your issues. Are you on any meds that could be creating this? Or any meds changing? Thyroid been checked? Severe anxiety can really play havoc on your system, good luck🙏🏻

Hello @johnwes5819

I hear your frustration. It sounds as if you are doing all that you can do to advocate for yourself. Your situation is difficult because of insurance restrictions.

Have you considered obtaining a new insurance plan? I'm not sure if you mentioned your age, but if you are on Medicare you might be able to change insurances at the end of the year and get a plan that would offer you more flexibility in choosing doctors and health care systems. The new plan might be more costly, but if you manage the increased cost for one year, it might help you to get a correct diagnosis and thereby be worth the extra cost.

Also, Mayo Clinic has a symptom checker. Here is a link to Mayo's website, https://www.mayoclinic.org/. Just type in "symptom checker" in the search box and it will take you to the right place.

Also, Mayo Clinic has affiliated hospitals throughout the country. These hospitals have the ability to consult with Mayo specialists and to get another opinion on complex cases. You might call Mayo in Minnesota and find out if there are any such affiliated health care centers in your area.

Also, in order to further your research and education, Mayo offers many email newsletters. I subscribe to several. Here is a link where you can sign up for different newsletters, https://www.mayoclinic.org/medical-professionals/publications/sign-up-email-newsletters.

I'm glad that you continue to post and let me know of your progress. I look forward to hearing from you again.

Will you keep posting as you search for help?

Something that has likely been checked out but just in case-A UTI??

Good one👍🏻Forgot that😊

@johnwes5819 This is like the doctors up here, 55 miles north of Boston. They simply do not have the experience in conditions that are less common.
Since it is not fatty liver, I have no other suggestions, until you can get to a major medical center that is a teaching hospital. If you continue to work with the doctors where you are, one of them may eventually come up with a suggestion. That’s what happened to me, the neurologist I was sent to suggested that my problem was my liver, which it was! I was sent for a CT scan, the diagnosis was made, and then I went to Boston for treatment (transplant).
JK

@johnwes5819 If you've had chem profile (which looks like liver enzymes, kidney function, lipids , electrolytes, LDL -. which is elevated with injury in body tissues, especially the heart, liver, kidney, muscles, brain, blood cells, and lungs, etc) and a CBC (complete blood count) and, i hope, a C-reactive protein test and ANA (for autoimmune diseases) all were in normal parameters, this is reassuring. AND if they've been repeated and are still reassuring, doubly so. Now these tests are not diagnostic but they certain often provide clues if something is potentially seriously wrong and/or progressing. If all seems pretty normal, I don't buy the current wastebasket diagnosis that many physicians turn to - oh, it's anxiety , it's depression. no, sometimes it is sloppy investigation and not keeping up with research on drug side effects and reactions and not thinking outside the proverbial box (because the "regular" box is easiest and I know docs are stressed and pressed for time). But don't give up. If I were you, I'd want a neurological exam (things like MS can sometimes present in unusual ways), a consult with an endocrinologist and a consult with someone who specializes in dysautonomia. There is also a chance you are being exposed to something in your environment - a chemical or pesticide.. something to consider, especially if your symptoms change when you are on a trip or away from your home for a while.

@francisco82 Thanks for the advice. Good luck to you