Ongoing, undiagnosed chest pain

Posted by tplefka @tplefka, Apr 18 3:11pm

Hi! I am posting in the hopes of finding some answers or possible routes for me to explore after 7+ months of undiagnosed chest pains. I am a 25 year old female. In September of 2020 I woke up in the middle of the night with a sharp chest pain, nausea, and dizziness. Prior to that I had been experiencing premature ventricular contractions (PVCs) (did not know that is what they were at the time) sporadically, but after the night in September they started really picking up frequency. I ended up in the ER twice in one week with chest pains and excessive PVCs and left with no diagnosis each time. Since then I have experienced an array of symptoms including: continued chest pains, arm pain, numbness in hands and sometimes face, back and neck pain, fatigue, dizziness, head pressure, the list goes on. I have gotten just about every test done on my heart that I could – echocardiogram, Heart MRI, Holter monitor, stress test – all of which have come back totally normal. I've also explored neurology and got an EMG of my arms and hands as well as a brain and cervical spine MRI – again, all totally normal. I've also had bloodwork done throughout all of this, everything always comes back normal. The problem is, I feel terrible. Almost every single day I experience chest pain that often feels like pressure or squeezing and can be sharp. I've gone onto Nadolol (beta blocker) which has helped minimize my PVCs but has not eliminated them, and they can sometimes be debilitating. Every doctor I've seen (and I've now seen many in search of second opinions) just says because I'm young they don't think I have anything to worry about, which is extremely frustrating when each and every day I am in pain. Sometimes, I have episodes that are so serious I've been close to or gone back into the ER. Even as recently as a few days ago, I woke up in the middle of the night and felt pressure in my chest and then suddenly felt as if my blood was running ice cold and I was extremely faint. While getting ready to go to the ER, I had to lay down before I passed out and slowly started feeling better, so did not go in. I am living my life in constant fear of the worst happening, and am searching for next steps to explore to try to find some answers. Has anyone had a similar experience or any suggestions of where to go next? Any thoughts or help is so appreciated… I want to feel better!

@tplefka Welcome to Mayo Clinic Connect, a place to give and get support.

25 years old is young to be going through so much medically.

You'll notice that I added your question to the group named Just Want to Talk. I did this so you could possibly connect with members that like yourself, don't exactly fit nicely into a particular group. The reason being that you do not yet have a diagnosis.

Regarding the Heart & Blood Health group, members like @kathyhg @maddie3211 @susie7 @rbb1938 @leec1 @adresler @davej @tim1028 @mariburr123 @robertaholmes have discussed similar topics and may be able to offer support.

You said that you have seen many doctors. May I ask if you have gone to a teaching or specialty hospital?

– What do you guys think could be causing my chest pain ? https://connect.mayoclinic.org/discussion/what-do-you-guys-think-could-be-causing-my-chest-pain/

REPLY
@erikas

@tplefka Welcome to Mayo Clinic Connect, a place to give and get support.

25 years old is young to be going through so much medically.

You'll notice that I added your question to the group named Just Want to Talk. I did this so you could possibly connect with members that like yourself, don't exactly fit nicely into a particular group. The reason being that you do not yet have a diagnosis.

Regarding the Heart & Blood Health group, members like @kathyhg @maddie3211 @susie7 @rbb1938 @leec1 @adresler @davej @tim1028 @mariburr123 @robertaholmes have discussed similar topics and may be able to offer support.

You said that you have seen many doctors. May I ask if you have gone to a teaching or specialty hospital?

– What do you guys think could be causing my chest pain ? https://connect.mayoclinic.org/discussion/what-do-you-guys-think-could-be-causing-my-chest-pain/

Jump to this post

Thank you so much for writing! I appreciate your thoughts and connections. No, I haven't gone to a teaching or specialty hospital yet. Is that something you would recommend?

REPLY

Hello @tplefka. It’s good idea to go to a teaching or specialty hospital, like @erikas has suggested, particularly because the medical professionals you’ve been seeing can’t seem to get to the bottom of your problem. Even if you have to travel some distance to get there, it’s probably still a good idea so that you don’t keep suffering. Have you ever had any lung or breathing issues? Sometimes asthmatic or other lung conditions can mimic cardiac symptoms. Some of your symptoms may be secondary to a particular primary medical condition. Answers are out there, and you just need to be your own best advocate.

REPLY

Hello @tplefka . I totally agree with @lagrange about going to a university medical center or a major medical center. When I first started becoming ill, none of the doctors locally knew what was wrong with me. Not that the local doctors are bad, but I had a rare and unheard of autoimmune disease. My husband made an appointment at the university medical school and I have been under care with them. Life changing! Will you think about going to a large medical system?

REPLY
@lagrange5

Hello @tplefka. It’s good idea to go to a teaching or specialty hospital, like @erikas has suggested, particularly because the medical professionals you’ve been seeing can’t seem to get to the bottom of your problem. Even if you have to travel some distance to get there, it’s probably still a good idea so that you don’t keep suffering. Have you ever had any lung or breathing issues? Sometimes asthmatic or other lung conditions can mimic cardiac symptoms. Some of your symptoms may be secondary to a particular primary medical condition. Answers are out there, and you just need to be your own best advocate.

Jump to this post

Thank you and @becsbuddy so much for the suggestion! I definitely think that's the next best route to explore. Can I ask – what kind of appointment would you suggest I make for this? Would it be best I just make a general appointment and go from there? I am just not sure where to start, and the one time I did go to a doctor connected with a hospital it was a very dismissive and quick appointment, so I just want to be sure I get in to see the right people! Thank you.

REPLY

Hello @tplefka. It might be a good idea to first contact the cardiology department for an appointment. Let them know at the outset that you’re not certain if this is really a cardiac condition but that you have received a lot of cardiac treatment. At Mayo, for example, the cardiology department can refer you elsewhere at the clinic if necessary. Many, if not most, hospital and medical systems subscribe to a medical record service that shares (consented to) patient information. However you should try to obtain as many of your own records as you can and bring them with you. Prepare a written journal of your complete medical history and include all of your questions. Keep a positive attitude.

REPLY
@lagrange5

Hello @tplefka. It might be a good idea to first contact the cardiology department for an appointment. Let them know at the outset that you’re not certain if this is really a cardiac condition but that you have received a lot of cardiac treatment. At Mayo, for example, the cardiology department can refer you elsewhere at the clinic if necessary. Many, if not most, hospital and medical systems subscribe to a medical record service that shares (consented to) patient information. However you should try to obtain as many of your own records as you can and bring them with you. Prepare a written journal of your complete medical history and include all of your questions. Keep a positive attitude.

Jump to this post

Thank you so much!

REPLY
@tplefka

Thank you and @becsbuddy so much for the suggestion! I definitely think that's the next best route to explore. Can I ask – what kind of appointment would you suggest I make for this? Would it be best I just make a general appointment and go from there? I am just not sure where to start, and the one time I did go to a doctor connected with a hospital it was a very dismissive and quick appointment, so I just want to be sure I get in to see the right people! Thank you.

Jump to this post

@tplefka Good morning! First, find a medical center that is connected to a medical school. They usually have the latest information. When you call, give a brief summary of your symptoms, etc. Then go back and complete any Release of Information forms for any doctor you saw. Also, get phone numbers of the medical records offices. @lagrange5 mentioned collecting all your medical records and taking them to the first appointment. I found out the hard way that doctors don’t want paper copies, they only want computer files. They can get these thru the phone numbers you give them. Also, have a list of all doctors you’ve seen: name, address, phone number, speciality.
What kind of doctor? Start with cardiology, if you can get in. Hospital May prefer that you start with internal medicine.
(Maybe I can add more when my fingers get in-numb!). Becky

REPLY
@becsbuddy

@tplefka Good morning! First, find a medical center that is connected to a medical school. They usually have the latest information. When you call, give a brief summary of your symptoms, etc. Then go back and complete any Release of Information forms for any doctor you saw. Also, get phone numbers of the medical records offices. @lagrange5 mentioned collecting all your medical records and taking them to the first appointment. I found out the hard way that doctors don’t want paper copies, they only want computer files. They can get these thru the phone numbers you give them. Also, have a list of all doctors you’ve seen: name, address, phone number, speciality.
What kind of doctor? Start with cardiology, if you can get in. Hospital May prefer that you start with internal medicine.
(Maybe I can add more when my fingers get in-numb!). Becky

Jump to this post

Thank you!

REPLY
In reply to @tplefka "Thank you!" + (show)
@tplefka

Thank you!

Jump to this post

@tplefka I’ve been thinking about you. Have you had any luck in finding a medical center? Becky

REPLY
@becsbuddy

@tplefka I’ve been thinking about you. Have you had any luck in finding a medical center? Becky

Jump to this post

No luck yet… I'm finding it very hard to get in anywhere any time soon ):

REPLY
Please sign in or register to post a reply.