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Medical Mystery
@chevelle30

Posts: 2
Joined: Jun 16, 2017

"Medical Mystery" help

Posted by @chevelle30, Jun 15, 2017

I am posting tonight desperately seeking help/advice/suggestions for my husband. He was diagnosed with a rare eye disease commonly called “birdshot” about 4 or 5 years ago and is currently on methotrexate for treatment to try to keep the disease from progressing. This disease is an autoimmune disorder and so far he is doing well on the current medicines. About 2 years ago this October he was a perfect bill of health other than the eye disease. Rarely ever sick, etc. One Saturday morning while eating breakfast he swallowed and had a pain in his chest area like he had swallowed an air bubble. I asked if he was ok and he answered yes. Within seconds he began slumping over. I pushed him back and he was completely out. His eyes were wide open, he didn’t appear to be breathing, he wasn’t moving, etc. About 20 or 30 seconds later he blinked and took a deep breath but still wasn’t completely coherent for a few seconds longer. I asked if he was ok and he said yes and began eating again. We didn’t go to the ER at that time(I know that we should have) because we believed it was a random choking thing. About 2 weeks later, he was laughing and had a sudden feeling of “doom” come over him. We immediately took his BP and he was in the hypertension stage and we rushed to the ER. They didn’t find anything wrong with him and was referred to a cardiologist. Over the next 3 months he was monitored, tested, etc, etc. and everything came back fine except a “Tilt Table” test in which he failed in less than 10 minutes of the 30 minute test. They released him in Feb’16 on 100mg of Locartin for his blood pressure and an additional bp medicine. He has continued to have “episodes” ever since. He can be fine one minute and feel bad the next. When he has one of these episodes, his BP spikes, he is nauseated, weak, experiences tightness in his right chest/shoulder/neck area, and tingling in his hands/feet These episodes leave him pale, weak, no energy, and an elevated BP for about 24 hrs. In April’16, he began experiencing pain in the center of his back. He tried a chiropractor first for a few months with no relief so he just dealt with it. It began getting worse at the beginning of this year and I convinced him to go to a Orthopedic Dr. A bone scan and MRI of his back revealed no issues and the Dr recommended a CT of his chest. The CT was done in May and revealed an issue with his Aortic artery and a CTA was then ordered. The CTA revealed that he has a minor Celiac Aortic Dissection. He was then referred to a Vascular Surgeon whom we saw this past Tuesday. Per the surgeon, the dissection is minor and no reason for concern at this time, but will need to be monitored over time. The surgeon also felt that the dissection is a result of all of the issues he has had over the last year and a half but couldn’t refer or point us in the next direction. He had another “episode” last night and we are just so frustrated and lost on what to do or where to go next, etc.. We know that there is something wrong but can’t find the right Dr’s to help him. Right now he seems to be a medical mystery to us and our Dr’s. He is only 40 yrs old! Please if anyone can help us we would be very appreciative!

REPLY

Hello @chevelle30
Thank you for your post and welcome to Mayo Connect. We are pleased that you found this online patient support group. You pose a very interesting question – your subject line – “Medical Mystery help” seems very appropriate indeed. I can understand your frustration at not finding a more suitable answer to his problem. It will be interesting to see if any of our members respond with similar experiences. It certainly appears as if your husband has been seen by a lot of specialists. You do not mention where you live, however, I’m wondering if he has been seen by a large medical center. That might be a way of pulling together these symptoms as well as the rare eye disease.

By the way, how frequently do these episodes occur? Are there any factors in common? It might be good to keep a journal of his activities, food, time of day, etc. that surround each episode – that might be helpful for a doctor to look for any common triggers. Please keep sharing with us. As you search for answers, I wish you and your husband well.

Teresa

Thank you @hopeful33250! We are from Hickory, NC. He is currently seen by a specialist at Wake Forest Baptist Hospital in Winston Salem for his eye disease and the vascular surgeon we saw this week was also at Wake Forest. Not sure if you are familiar with Wake Forest but they are a large medical center. Both Dr’s are aware of the issues he is having but neither have been helpful except in the area of their expertise. His eye Dr did run a multitude of blood tests for things such as RA, Lupus, Chron’s disease, etc. and all of the tests can back fine. Also, one thing I forgot to mention is that he had a large kidney stone that had to be blasted by shock wave about a month before the episodes started.

The episdoes really dont have a trigger or specific pattern. They just happen at random but always have the same symptoms. He has at least one a month or possibly more. He often doesnt tell me when they happen. With his work schedule I usually dont see him Wed-Sat. I am going to start keeping a journal of the episodes beginning now and get copies of all of the tests, Dr’s notes, etc to hopefully give to our next Dr/Specialist. At this point we just dont know where to go or who to see.

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