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casey0595
@casey0595

Posts: 4
Joined: Aug 26, 2017

Husband has unexplained chest pains, doctors unable to diagnose

Posted by @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!

REPLY

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?

@oldkarl, wow, oldkarl, are you a Dr? It sure sounds like you know your stuff. I wouldnt mind having you as my doc.
Dany. <:)

@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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He had a CT with contrast of his neck to his pelvis, with no abnormal findings. Would that rule out any potential spleen, heart, etc. issues? Or is there another test specifically? He’s had several urine tests with no protein in the urine. Is there another test he can have to test for that? We have an appointment with Mayo Clinic in Jacksonville (we live in Atlanta so that is the closest one to us). Thank you so much for taking the time to reply & all the info. We appreciate it greatly!

No, Danybe good1, I’m not a doc. I just have something in I my body that we have not been able to pin down, so we keep working. You can read my story at https://bit.Ly/1w7j4j8 What I have done, anyone can do. Just start writing down everything you can about his body medicals, in as much medical detail as you can get from the paperwork the docs give you, and make sure it is accurate, not just from memory.I started this search when I was about 16, and am still working on it.In any case, the good docs will appreciate my efforts. If the medico does not appreciate that I am trying to find the truth, I find another doc immediately. I don’t claim to know all that is happening, but I do know some. Thanks. And Casey, don’t give up. You never know when some clue will pop in that makes sense out of the whole thing. How about the serum free light chain (sFLC). Mayo does these well. They can also put your samples through an atom force microscope Actually, the sFLC is probably the top of the relatively inexpensive tests, followed by the ALNYLAMACT.com genetics for hATTR and other Amy, which your doctor can arrange with a phone call.

@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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Casey, separate to the potential of a medical problem, what is his sleep pattern.?

@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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Back again, Casey0595. A few more thoughts. First, Very few tests actually rule anything in or out, such as the organs, nerves, etc. Nearly all just move things a little closer to the point. And many tests must be your own observation. i.e., About urinary protein. When he pees into the toiled, directly into the water and not against the toiled wall, does it make a foam or froth on the water? Make more than maybe ten bubbles that last more than a few seconds? Have fresh urine in a catheter or into a glass container that looks cloudy? Bubbly?
Bloody? Clotted with blood? If so, that is protein in the urine. Does he bruise easily from injections? Does he get bruising around the eyelids? Red swelling around the nose bridge? Red or purple dots anywhere that last weeks or months? Black toes, anything from speckles to whole toes that last weeks or months? Gain or lose more than 5 pounds in a day? Know when his heart flutters or skips a beat? have tachycardia at about 153 rpm? have discolored skin on lower arms or legs? Does that skin look furrowed like a plowed field? Does his sight appear to be looking through rippled water? have trouble swallowing? Cough a lot? His voice changing? Little patches of plowed field skin can grow on the larynx or tongue or bladder or lungs, etc., and cause all manner of problems. Have dandruff the consistency of toothpaste? Have electric shocks running along any nerves, even cardiac sensori-motor nerves. These are the kind of signs that can really give a good doctor some grist to chew on. THEN the doc can get a brain scan and look for deposits around the cerebral cortex, not Alzheimers. Or many other things.

Hi Casey, I can only give you some thoughts from my experience to factor into your search. He is very young for heart issues but he wouldn’t be the first. I had a nuclear stress test in Dec. ’13. All is Ok no problems. In Apr ’14 I had 7 bypasses. Those tests are great when they disclose things but as someone else has said they don’t tell everything. What doesn’t show up today may in the future. I would ask for some nitro-glycerin. He would take one only when in pain and see if the pain is improved or no change. Sometimes you have to push the Docs. I was taking nitro to climb hills cycling (one day took 3 separate doses – one after each episode of chest pain. Instructions were no more than 3 then call 911. I thought that I should have a angiogram but the MD wasn’t convinced until I told him I just couldn’t go on like this he had to do something. Was he going to send me home? Probably not sometimes they are just test ing how bad you think it is. They usually use the 1-5 or 1-10 scale. Be honest. I would also add to your note taking, light exercise just walking with a little incline and see if the pain comes back. I am convinced that exercise led me to be my own “doctor”.
I also had a friend who ran the Boston Marathon and every day played tennis. He told the MD after jogging a short ways he would “hit the wall”. They ran tests – nothing wrong – go home. He died of a heart event at home setting at his desk. Mayo will be helpful I hope. Let us know.

@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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He usually wakes up between 6&6:30am. He falls asleep between 11-12

@oldkarl

No, Danybe good1, I’m not a doc. I just have something in I my body that we have not been able to pin down, so we keep working. You can read my story at https://bit.Ly/1w7j4j8 What I have done, anyone can do. Just start writing down everything you can about his body medicals, in as much medical detail as you can get from the paperwork the docs give you, and make sure it is accurate, not just from memory.I started this search when I was about 16, and am still working on it.In any case, the good docs will appreciate my efforts. If the medico does not appreciate that I am trying to find the truth, I find another doc immediately. I don’t claim to know all that is happening, but I do know some. Thanks. And Casey, don’t give up. You never know when some clue will pop in that makes sense out of the whole thing. How about the serum free light chain (sFLC). Mayo does these well. They can also put your samples through an atom force microscope Actually, the sFLC is probably the top of the relatively inexpensive tests, followed by the ALNYLAMACT.com genetics for hATTR and other Amy, which your doctor can arrange with a phone call.

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Thank you so much for your response. It’s comforting to know we aren’t crazy in continuing our search for answers! We have an appointment at mayo in Jacksonville is 2 weeks so hopefully we can get to the bottom of this

@oldkarl

No, Danybe good1, I’m not a doc. I just have something in I my body that we have not been able to pin down, so we keep working. You can read my story at https://bit.Ly/1w7j4j8 What I have done, anyone can do. Just start writing down everything you can about his body medicals, in as much medical detail as you can get from the paperwork the docs give you, and make sure it is accurate, not just from memory.I started this search when I was about 16, and am still working on it.In any case, the good docs will appreciate my efforts. If the medico does not appreciate that I am trying to find the truth, I find another doc immediately. I don’t claim to know all that is happening, but I do know some. Thanks. And Casey, don’t give up. You never know when some clue will pop in that makes sense out of the whole thing. How about the serum free light chain (sFLC). Mayo does these well. They can also put your samples through an atom force microscope Actually, the sFLC is probably the top of the relatively inexpensive tests, followed by the ALNYLAMACT.com genetics for hATTR and other Amy, which your doctor can arrange with a phone call.

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Hi Casey, @casey0595,

I wanted to follow-up and ask whether all went well at your husband’s appointment? I sincerely hope so, and if you wish do let us know if you have any comments or concerns; we’d love to hear back from you.

@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.

@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.

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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