Looking for answers, undiagnosed

Posted by mims123 @mims123, Jun 20 7:33am

Maybe someone can relate to this. Any suggestions would help please. My brother has always been very healthy but does have asthma. He works a lot and never misses a beat, he is 53 years old. Back in 2019 he was diagnosed with Epstein Barr that brought on a temporary bout of Hashimoto’s. This took a while to get over. 2 years later he started having spikes in blood pressure and some elevated heart rate issue. (Halter monitor showed ok after wearing 1 month) In the morning he is experiencing what I describe as morning sickness. The smell of food makes him sick. (Gallbladder tested with lower Gi and scan of stomach was good) He has lost almost 20 lbs. He has dizziness and extreme fatigue to the point that he has not worked in 3 months. He has had every type of blood work known. One thing that turned up on a cat scan was pan sinusitis. He has had 1 month of antibiotics and is waiting on results of a second cat scan. Meanwhile he has a reoccurring cough that’s flaring up asthma issues. He has been tested for thyroid and adrenal issues but all show in range. He can’t really explain his overall feeling but says he just feels sick and weak to the point it has debilitated him. Any suggestions would help he has gone from an active healthy person to basically home bound. He has seen specialists after specialist that can’t explain what is happening to him. Any thoughts would be appreciated. Since all tests show normal he will be forced to return to work or lose his job. If we do t find an answer soon. My brother lives to work and enjoy life❤️ Thanks!

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?

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@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?

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@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.

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@becsbuddy

@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?

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@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.

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@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.

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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.

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