Looking for answers, undiagnosed

Hello @mims123 and welcome to Mayo Clinic Connect. This must all be so much for your brother to figure out, especially given his fatigue, which never helps. That said, he sure is lucky to have you to keep searching for answers on his behalf.

Since you mentioned his Epstein Barr and Hashimoto's, I would like to share that member @sfdm13 has also recently commented about their experience with both.

While we wait for members to join, have you considered seeking care at a hospital that can provide your brother with multidisciplinary and coordinated care between departments?

@mims123 Good morning. Your brother sounds a lot like I did before I finally was diagnosed. I started vomiting for no reason and it got bad, but always in the morning. I could usually eat later but nothing tasted good. I needed assistance to walk and progressed to a walker. I was choking and coughing on water and my voice changed. I, too, lost 20 lbs. The doctors thought it ‘was all in my head’, and, in reality, it was. An MRI showed lesions on my brain. They didn’t know what it was and as they were debating, I got worse. I was finally admitted when I was non-responsive. My husband contacted the university medical center and the neurologist told them to do a brain biopsy and start high dose steroids.. As soon as we could, my husband too me to the medical center and they diagnosed an autoimmune disease on my brain. Suggest that your brother ask for an MRI. And see about going to a major medical center. They should be better at diagnosing strange things. I wish you luck and an answer for your brother. Will you let us know what happens and what you learn?

@amandajro , @sfdm13 thanks for replying and helping. This has been so difficult for him as he is such an active person. It’s like hitting a brick wall.we have taken him to emergency room 3 times . The specialist we have seen keeps referring him to new doctors. He has seen an ENT, infectious disease, endocrinologist, internal medicine, gastrologist, allergist, pulmonologist, cardiologists and multiple GP’s and had multiple urgent care visits. Resulting in normal test results and no diagnosis. One thing I want to mention is they told him he no longer has Hashimotos but feels like he has all the symptoms. From research we have done he feels all is related to thyroid or adrenals but tests are at the low end of normal range.

@becsbuddy thank you for the input. He had an MRI about 2 months ago that showed only pan sinusitis. He was placed on a strong antibiotic for 21 days followed by another round but still has same symptoms. Just had another MRI last week and awaiting results. I will definitely update on status and appreciate you sharing this vital information.

@mims123 Hello. Has your brother had a CT scan or MRI of his head? His story sounds similar to my story of years ago (I have many more issues now, but I'm 86!). My CT scan and MRI revealed a brainstem Arterioveinous Malformation (AVM) as well as a right brain one, which then accounted for the dizziness, nausea, instability, etc. I joined your discussion after other Mayo Connect members had already contributed, so possibly you've acknowledged your brother has had these head scans. Among all the specialists he's seen, I don't believe you've mentioned if he's seen a Neurologist yet. (?)
These would be my two or three recommendations. Good luck in your bro's quest for an answer.

Thanks for the info. Yes, he has had 2 MRI’s. But scan only showed pan sinusitis. We have done much research And everything points to adrenal issues from what we see.