1. < Heart & Blood Health

Husband has unexplained chest pains, doctors unable to diagnose

Posted by casey0595 @casey0595, Aug 26, 2017

Hello, my name is Casey, I am new here & coming here to ask for advice for my husband. I’ve been to enough doctors now to know that health history is helpful, so here goes – i will try to keep this as short but as detailed as possible, please bear with me. He is 30 years old. His father passed away from skin cancer when he was 60 & my husband was 10. He has 1 brother & 4 sisters. He is the youngest. His father & mother were both born in Greece. His family has no history of mental illness. He has had chest pains on & off for the past 3 years. Along with the chest pains he’s complained of feeling dizzy/faint/”cloudy” & just a general sense of not feeling right. We have seen a neurologist, cardiologist, pulmonologist, endocrinologist, gastroenterologist, ent, urologist, our general practitioner, a disease specialist – on top of multiple ER visits. He has had a regular stress test, nuclear stress test, CT scan, MRI of his entire body (not all at once, but over time its equaled his entire body), colonoscopy, endoscopy, multiple different blood tests, he’s even been tested for lymphoma, Lyme’s Disease, he’s had an EEG & ECG. I am sure I am missing some tests… however, each test came back perfect except his vitamin D is low (he’s taking prescribed supplements), his testosterone is low (not enough to need supplements per our endocrinologist), his endoscopy came back inconclusive for Celiac disease so he did cut out gluten completely, his cholesterol is also minimally high so he also cut out meat. He has complained of minor dizziness here & there, he’s never passed out. He woke up sweating once or twice in June (what prompted them to check for Lymphoma). He also has mentioned that he just doesn’t feel… right? The big thing is that everyday he gets home from work he complains of his chest hurting. He will call me in the middle of the day saying his chest hurts. I know he is hurting, I know what he is feeling is real but what else could they possibly test for? Is there anything I can recommend? I have no idea what to do anymore or how to help him. His pains have only interrupted his workday a few times to where he has gone to the EMT’s that are on site (he works at an airport). I would say we go through phases of his chest hurts so bad we go to ER only to be told he’s fine. At this point in time he says its mainly just annoying & frustrating to be told nothing is wrong but feel like something is, people don’t just have chest pains for nothing do they? I know his father passing away when he was still very young has scarred him & I know that is playing a minor role in his worry – even though he won’t admit it. I just want my husband to feel better again & to have some peace of mind. I want to know that he is okay & nothing is wrong but once again I ask, what could they possibly test for from here?
If you’re still here, thank you for taking to the time to read this, I will take any & all advice that you are willing to give!
I have already posted this is in a different discussion group, hoping it will reach some new eyes!

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 26, 2017
In reply to @oldkarl "Hi, Casey. I know you are having a rough time with whatever this is. However, you..." + (show)
@oldkarl

Hi, Casey. I know you are having a rough time with whatever this is. However, you two are not alone. Let me suggest a couple of things. First, have your PCP order a few things relating to protein misfolding and depositing. Start with a 24 hour protein in urine, looking for protein. Any is too much. Then a Bindings@ Serum Free Light Chain search for Protein. Any over the reference level is a first-order disorder, and a killer. A pain in the sternum could be heart, or arthritis. A pain in the shoulder, front or back or side, or from the shoulder to the sternum, is most likely a diseased spleen, perhaps swollen, infected, or invaded by amyloid. Are you close enough to Mayo-Rochester to go there? or Sloan-Kettering, or Mass General or Brigham & Womans, or City of Hope? Is breathing a problem? Don't pay any attention to the O2 numbers, just any sense of shortness of breath. Make sure the medicos do a CT of the brain cortex, and the heart. Measure everything, especially the cardiac v-walls and the amorphous deposits (starchy stuff) in the brain. Pay attention to the thyroid, and especially the goiter. If there is one, it is probably amyloid, and causing the pain. Upper GI? Barrett's Esophagus? Pancreatic cancer? A-Fib? Tachycardia? Of all these, my guess would be eosinophilic problems(coughing or gagging), amyloidosis (Brain deposit or goiter), or spleen (left side). Liver or kidney would be next. Where exactly is the pain?

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Hello @pastorray,

Welcome! May I ask what brings you to Connect? We look forward to getting to know you.

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PastorRay | @pastorray | Sep 26, 2017
In reply to @oldkarl "Hi, Casey. I know you are having a rough time with whatever this is. However, you..." + (show)
@oldkarl

Hi, Casey. I know you are having a rough time with whatever this is. However, you two are not alone. Let me suggest a couple of things. First, have your PCP order a few things relating to protein misfolding and depositing. Start with a 24 hour protein in urine, looking for protein. Any is too much. Then a Bindings@ Serum Free Light Chain search for Protein. Any over the reference level is a first-order disorder, and a killer. A pain in the sternum could be heart, or arthritis. A pain in the shoulder, front or back or side, or from the shoulder to the sternum, is most likely a diseased spleen, perhaps swollen, infected, or invaded by amyloid. Are you close enough to Mayo-Rochester to go there? or Sloan-Kettering, or Mass General or Brigham & Womans, or City of Hope? Is breathing a problem? Don't pay any attention to the O2 numbers, just any sense of shortness of breath. Make sure the medicos do a CT of the brain cortex, and the heart. Measure everything, especially the cardiac v-walls and the amorphous deposits (starchy stuff) in the brain. Pay attention to the thyroid, and especially the goiter. If there is one, it is probably amyloid, and causing the pain. Upper GI? Barrett's Esophagus? Pancreatic cancer? A-Fib? Tachycardia? Of all these, my guess would be eosinophilic problems(coughing or gagging), amyloidosis (Brain deposit or goiter), or spleen (left side). Liver or kidney would be next. Where exactly is the pain?

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I have no issues that need comments,. I thought it would be of value to me to read the conversations.

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srounkle | @srounkle | Oct 2, 2017

Hi Casey, give my best to your husband, he is very lucky to have you helping him the way you are, please keep up your support, it is crucial for people having serious problems which aren't diagnosed, or misdiagnosed.
I have a suggestion which might be helpful, as I know that 1 in about every 100 people was born with a bicuspid aortic valve (instead of tricuspid) and many of them aren't diagnosed until they reach the morgue. BAV is something that obviously doesn't get as much attantion as it should, despite the high prevalence. Mine started with a few episodes of c/p many years ago, then I started having severe night sweats, nausea/vomiting, dizziness, and sob and increasingly more regular c/p with exertion or laying down. It sounds like many of the symptoms he/you describe fit the bill, but it could still be many things. I will also say that people who have this condition are prone to abdominal problems (as I have been my entire life) due to the body shunting blood away from the intestines first during episodes of increased heart failure, i.e. exerting himself, or the end of the day.
Do his ankles ever swell? When does the chest pain usually start? Does the chest pain change with inspiration/movement or palpation? Does the pain seem to radiating from one point to another point? Does he get SOB when lying down? Productive cough (color of phlegm?)? What does he find helps relieve the pain? Rest? Does he wake up with chest pains and SOB, or his dizziness? How does he describe the pain in his chest, besides intermittent?
I would like our country to start screening for this congenital heart defect, like the AMA and international community of valve specialists and many cardiologists believe should be done. This is a serious heart condition which can start affecting people who have it, at any age and usually kills by causing an aneurysm, which eventually dissects, if not recognized. People with this heart problem often have connective tissue problems and this might be an early sign in some. Has he had an ultrasound(echo), stress echo of his heart to check for valvular problems? If not, please have his doctors check it.

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