Undiagnosed after 1.5yrs after many tests and specialists

Posted by jc123 @jc123, Jul 3 10:38am

Hello,

I get these "attacks" which started suddenly in Jan 2019. I have an attack about once per month and they last from 20min to 2hrs. The days and weeks after each attack I feel like total garbage.I stopped having attacks from Dec 2019 until May of 2020 and now have started again. These attacks normally happen 20mins after eating.

Attack symptoms:
Immediate anxiety, felt like I was going to pass out, dizziness, heart racing and beating hard, hard to breathe, pain/tightness in chest, tremors, arms felt cold, high BP, PVCs so hard they feel ilke I'm being punched in the sternum, and an excruciating pain below my sternum. Immediately after an attack I'm so exhausted I could pass out.

Daily symptoms after an attack :
Constant pain below sternum, PVCs that make me stop breathing for a fraction of a second, loose stools after every meal, hard to breathe laying down, dark stool, muscle pain in arms, pulse felt in stomach.

One of the ED visits they found a hiatal hernia which was repaired by Nissan Fundiplication in Feb 2019 (I also had one in 2007).The day after surgery I felt OK. The following day, 30mins after they gave me food I was passing out from the sternum pain. The opened me back up and saw I had a lot of inflammation. I went 2 months without any attacks after the surgery.

About 2 months later, April 2019 the attacks started again. Many ED trips, extended hospital stays, surgeries, testing, and specialists later no one knows what's wrong.

Starting in June 2020 I also now have what I believe is obstructive sleep apnea. I wake several times a night, sometimes chocking or gasping for air, with my heart racing, dry mouth, and a headache.

I've also had my gallbladder removed, and my Nissan Fundiplication changed to a Toupet Fundiplication. Nothing has helped and all 30+ doctors I've seen has any clue what's going on. I'm trying to get in to see the Mayo clinic next when I found this site and figured I'd try here as well.

My quality of life has greatly deteriorated and I'm in constant pain. Any help or advice would be greatly appreciated.

Thanks,
Jon

Jon, I went 10 years being undiagnosed with my issues. I went to the Mayo Clinic here in Minnesota. In ten days I had a diagnosis and a treatment plan in place. Mayo has a lot of technology and expertise. However, they don’t have answers for everything. I’d encourage you to give them a try. Good luck to you, I hope you find some answers.

REPLY

@jc123 Hi, Jon. Welcome to Connect.
I went through a similar thing with not being diagnosed for almost a year and a half. My symptoms were not similar to yours, just the lack of a diagnosis is. What I learned is if I ever again do not get a diagnosis here in southern NH to head right to Boston. It turned out that I had non-alcoholic cirrhosis. If I had not gotten diagnosed when I did the malignant lesions that had developed may have increased in size or number rendering me not a candidate for a liver transplant. Thankfully I was diagnosed in time and I had a liver transplant at Mass General in Boston, which is my hospital of choice. I now go there for everything except my PCP.

I realize that not everyone lives close to a Mass General or a Mayo, or Johns Hopkins, but if you do have a university teaching hospital within reach then go there. Even if it is a bit of a distance, go there. Your health is worth it. Check the US News report for top hospitals, that's a great source.
https://health.usnews.com/best-hospitals
It sounds like it could be a gastroenterology problem so you could check specifically for hospitals that are well rated for that.
https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
I hope you will be able to get diagnosed soon. Don't be discouraged if you have to wait for a while for an appointment. That happened to me but they put me on a waitlist and I was called much sooner than when the appointment was scheduled. I hope too that you will let us know how things are going.
If you put my Connect name, contentandwell preceded by the @ I will be alerted that I have a response.
JK

REPLY
@contentandwell

@jc123 Hi, Jon. Welcome to Connect.
I went through a similar thing with not being diagnosed for almost a year and a half. My symptoms were not similar to yours, just the lack of a diagnosis is. What I learned is if I ever again do not get a diagnosis here in southern NH to head right to Boston. It turned out that I had non-alcoholic cirrhosis. If I had not gotten diagnosed when I did the malignant lesions that had developed may have increased in size or number rendering me not a candidate for a liver transplant. Thankfully I was diagnosed in time and I had a liver transplant at Mass General in Boston, which is my hospital of choice. I now go there for everything except my PCP.

I realize that not everyone lives close to a Mass General or a Mayo, or Johns Hopkins, but if you do have a university teaching hospital within reach then go there. Even if it is a bit of a distance, go there. Your health is worth it. Check the US News report for top hospitals, that's a great source.
https://health.usnews.com/best-hospitals
It sounds like it could be a gastroenterology problem so you could check specifically for hospitals that are well rated for that.
https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
I hope you will be able to get diagnosed soon. Don't be discouraged if you have to wait for a while for an appointment. That happened to me but they put me on a waitlist and I was called much sooner than when the appointment was scheduled. I hope too that you will let us know how things are going.
If you put my Connect name, contentandwell preceded by the @ I will be alerted that I have a response.
JK

Jump to this post

Informative and helpful!
Thank you for taking the time to write.

Liked by jc123

REPLY
@bonnieh218

Jon, I went 10 years being undiagnosed with my issues. I went to the Mayo Clinic here in Minnesota. In ten days I had a diagnosis and a treatment plan in place. Mayo has a lot of technology and expertise. However, they don’t have answers for everything. I’d encourage you to give them a try. Good luck to you, I hope you find some answers.

Jump to this post

Bonnie, although your ultimate diagnosis may not parallel my circumstances, your story piqued my curiosity. W/O boring you or others with details, my short version is simply that I have been chronically ill for over 5 years with overlapping symptoms that have yet to be understood. I suffered a rare heart event 2.5 years ago from which my recovery should have been reasonably easy and complete. It was anything but that! Not a doctor, and there have been many, can find a cause for my unbearable, constant chest pain, SOB, unrelenting nausea and nighttime awakenings with chaotic heart rate and intensified chest pain that generally radiates down both arms and legs. Cardiology sends me to GI doctor and he sends me right back to Cardio! So my question is this……since I am at my wits end and cannot get a diagnosis even after many, many diagnostics and trips to every conceivable specialist, I am willing to pursue 'investigation' elsewhere in the country. Whether Mayo, Mass General or Hopkins but how does one get the ball rolling if you don't have a referral or even a grasp of which department to explore?
Any direction would be immensely appreciated as I'm getting nowhere and in a downward spiral with very quickly progressing symptoms.
Thank you so, so much!

REPLY
@bonnieh218

Jon, I went 10 years being undiagnosed with my issues. I went to the Mayo Clinic here in Minnesota. In ten days I had a diagnosis and a treatment plan in place. Mayo has a lot of technology and expertise. However, they don’t have answers for everything. I’d encourage you to give them a try. Good luck to you, I hope you find some answers.

Jump to this post

Thank you for your words of encouragement. Hopefully I can get in to see them soon. I applied once last year but was turned down. My primary is trying to get me a referral as the next step.

REPLY
@contentandwell

@jc123 Hi, Jon. Welcome to Connect.
I went through a similar thing with not being diagnosed for almost a year and a half. My symptoms were not similar to yours, just the lack of a diagnosis is. What I learned is if I ever again do not get a diagnosis here in southern NH to head right to Boston. It turned out that I had non-alcoholic cirrhosis. If I had not gotten diagnosed when I did the malignant lesions that had developed may have increased in size or number rendering me not a candidate for a liver transplant. Thankfully I was diagnosed in time and I had a liver transplant at Mass General in Boston, which is my hospital of choice. I now go there for everything except my PCP.

I realize that not everyone lives close to a Mass General or a Mayo, or Johns Hopkins, but if you do have a university teaching hospital within reach then go there. Even if it is a bit of a distance, go there. Your health is worth it. Check the US News report for top hospitals, that's a great source.
https://health.usnews.com/best-hospitals
It sounds like it could be a gastroenterology problem so you could check specifically for hospitals that are well rated for that.
https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
I hope you will be able to get diagnosed soon. Don't be discouraged if you have to wait for a while for an appointment. That happened to me but they put me on a waitlist and I was called much sooner than when the appointment was scheduled. I hope too that you will let us know how things are going.
If you put my Connect name, contentandwell preceded by the @ I will be alerted that I have a response.
JK

Jump to this post

@contentandwell, Thank you for sharing your experience. I actually live in central NC right by Duke and UNC. Unfortunately, I have seen GI and Cario doctors from both and neither have been able to help. I'm caught in a loop where each new specialist I see tells me within 15mins of meeting me that they cannot help me. I'm guessing this is because they've seen my previous testing from previous doctors and feel those results are conclusive.

REPLY
@crittercaregal

Bonnie, although your ultimate diagnosis may not parallel my circumstances, your story piqued my curiosity. W/O boring you or others with details, my short version is simply that I have been chronically ill for over 5 years with overlapping symptoms that have yet to be understood. I suffered a rare heart event 2.5 years ago from which my recovery should have been reasonably easy and complete. It was anything but that! Not a doctor, and there have been many, can find a cause for my unbearable, constant chest pain, SOB, unrelenting nausea and nighttime awakenings with chaotic heart rate and intensified chest pain that generally radiates down both arms and legs. Cardiology sends me to GI doctor and he sends me right back to Cardio! So my question is this……since I am at my wits end and cannot get a diagnosis even after many, many diagnostics and trips to every conceivable specialist, I am willing to pursue 'investigation' elsewhere in the country. Whether Mayo, Mass General or Hopkins but how does one get the ball rolling if you don't have a referral or even a grasp of which department to explore?
Any direction would be immensely appreciated as I'm getting nowhere and in a downward spiral with very quickly progressing symptoms.
Thank you so, so much!

Jump to this post

@crittercaregal, Some of your symptoms sound similar to mine. I also had a sudden event that started my illness, which had all the symptoms of a heart attack but my Triponin and EKG were clear. After that event I constantly have pain directly below my sternum, is this where yours is as well? I have PVCs that hit so hard it's almost like I'm getting punched. I'm also SOB all the time, especially when laying on my back. Just within the past 4 weeks I've also developed the same nighttime symptoms as you describe. The only symptom I don't have is nausea and the leg pain.

Also this "Cardiology sends me to GI doctor and he sends me right back to Cardio!" describes exactly what I've experienced as well.

REPLY
@jc123

@contentandwell, Thank you for sharing your experience. I actually live in central NC right by Duke and UNC. Unfortunately, I have seen GI and Cario doctors from both and neither have been able to help. I'm caught in a loop where each new specialist I see tells me within 15mins of meeting me that they cannot help me. I'm guessing this is because they've seen my previous testing from previous doctors and feel those results are conclusive.

Jump to this post

@jc123 when I confronted my PCP about not diagnosing me despite obvious symptoms and red flags he said he relied on what my previous doctor had thought! To me, that’s just wrong. When you go to a doctor for another opinion they should start from scratch and try to put the pieces of the puzzle together.

If you ever watched House on TV about a cranky doctor who was an incredible diagnostician you see, despite that just being TV, that a good doctor really has to give difficult diagnoses a lot of thought and analysis. I think that’s a gift and more doctors don’t have it than do.
JK

Liked by jc123

REPLY
@crittercaregal

Bonnie, although your ultimate diagnosis may not parallel my circumstances, your story piqued my curiosity. W/O boring you or others with details, my short version is simply that I have been chronically ill for over 5 years with overlapping symptoms that have yet to be understood. I suffered a rare heart event 2.5 years ago from which my recovery should have been reasonably easy and complete. It was anything but that! Not a doctor, and there have been many, can find a cause for my unbearable, constant chest pain, SOB, unrelenting nausea and nighttime awakenings with chaotic heart rate and intensified chest pain that generally radiates down both arms and legs. Cardiology sends me to GI doctor and he sends me right back to Cardio! So my question is this……since I am at my wits end and cannot get a diagnosis even after many, many diagnostics and trips to every conceivable specialist, I am willing to pursue 'investigation' elsewhere in the country. Whether Mayo, Mass General or Hopkins but how does one get the ball rolling if you don't have a referral or even a grasp of which department to explore?
Any direction would be immensely appreciated as I'm getting nowhere and in a downward spiral with very quickly progressing symptoms.
Thank you so, so much!

Jump to this post

If you are thinking of Mayo you would initially ask for an appointment in general internal medicine. After their exam, they will decide which departments to send you on to see.

REPLY
@contentandwell

@jc123 when I confronted my PCP about not diagnosing me despite obvious symptoms and red flags he said he relied on what my previous doctor had thought! To me, that’s just wrong. When you go to a doctor for another opinion they should start from scratch and try to put the pieces of the puzzle together.

If you ever watched House on TV about a cranky doctor who was an incredible diagnostician you see, despite that just being TV, that a good doctor really has to give difficult diagnoses a lot of thought and analysis. I think that’s a gift and more doctors don’t have it than do.
JK

Jump to this post

@contentandwell I know well what you experienced. I have the same )(*^&^% from my doctors. Fortunately, in one sense, I have found three (3) doctors in Oregon who agree with me. Yet all three are afraid to put their name on the diagnosis because the one who said "No!" is a big shot in the Samaritan system that I have to use. The other good thing (I suppose) is that the disease I actually have will kill me fairly soon, I hope, and nothing can be done about it by anyone. But I still have a hate in my heart for the system and for that one doc, because he passed the word to the other 1-AAA systems I have tried to get in to for treatment or at least support. May he catch COVID soon.

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@crittercaregal and @jc123, you ask about "how to get the ball rolling?" and how to get an appointment at Mayo Clinic. You can self refer or ask your physician for a referral. To self refer contact the Mayo Clinic location most convenient for you either by phone or online form. See the contact information here: http://mayocl.in/1mtmR63

You may also wish to read more tips about getting an appointment in the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Or read more about Appointments here: https://www.mayoclinic.org/patient-visitor-guide

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I wish I had something meaningful or helpful to say. All that I can offer you is that I hope you find someone in the medical profession to help in your healing.
I offer my prayer for you.
Please let us know how you are doing.
I will continue to pray until we hear from you. 🙏

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@colleenyoung

@crittercaregal and @jc123, you ask about "how to get the ball rolling?" and how to get an appointment at Mayo Clinic. You can self refer or ask your physician for a referral. To self refer contact the Mayo Clinic location most convenient for you either by phone or online form. See the contact information here: http://mayocl.in/1mtmR63

You may also wish to read more tips about getting an appointment in the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Or read more about Appointments here: https://www.mayoclinic.org/patient-visitor-guide

Jump to this post

Very valuable information and for that, I thank you! But just out of curiosity, are all Mayo locations considered equal? I am in NC and am remarkably dismayed that I cannot get adequate medical care despite the world renowned institutions I have at my finger tips. In a perfect world (does that exist?), I'd prefer something far closer to home….perhaps Hopkins? But I suppose that if traveling is in the cards, it may just be an added geographic inconvenience to go beyond my comfort zone. Even thought about Mass Gen as it may be more direct in terms of routing. But, regardless, I desperately need help and that can only be achieved if/when/where answers are attainable. Of course, with the damn Virus, all of the above may be little more than a pipe dream for the foreseeable future.

REPLY
@jc123

@contentandwell, Thank you for sharing your experience. I actually live in central NC right by Duke and UNC. Unfortunately, I have seen GI and Cario doctors from both and neither have been able to help. I'm caught in a loop where each new specialist I see tells me within 15mins of meeting me that they cannot help me. I'm guessing this is because they've seen my previous testing from previous doctors and feel those results are conclusive.

Jump to this post

A bit confused but please……whichever of you terrific, albeit, unfortunately sick individual who resides in Central NC, I MUST connect with you!
Your story is mine to a tee right down to your locale and seriously want to pick your brain!
Best and many, many thanks!

REPLY
@crittercaregal

Very valuable information and for that, I thank you! But just out of curiosity, are all Mayo locations considered equal? I am in NC and am remarkably dismayed that I cannot get adequate medical care despite the world renowned institutions I have at my finger tips. In a perfect world (does that exist?), I'd prefer something far closer to home….perhaps Hopkins? But I suppose that if traveling is in the cards, it may just be an added geographic inconvenience to go beyond my comfort zone. Even thought about Mass Gen as it may be more direct in terms of routing. But, regardless, I desperately need help and that can only be achieved if/when/where answers are attainable. Of course, with the damn Virus, all of the above may be little more than a pipe dream for the foreseeable future.

Jump to this post

@crittercaregal, Mayo physicians work as teams. Regardless of which location you choose, you have the benefit of the collective expertise of a multidisciplinary team that will include experts relevant to your situation. Naturally, I encourage you to contact Mayo to find out more. However, I concur that travel is an important consideration, especially now. You mention Hopkins and Mass General being closer to home. (@contentandwell can share more about MGH.) These are both first-rate facilities and should be included in your research as you decide where to seek a second opinion. Often, a visit to Mayo Clinic is only required for diagnosis and then Mayo physician(s) can coordinate care locally.

Alternatively, you may wish to seek care at an institution in North Carolina that is part of the Mayo Clinic Care Network. Learn more here:
https://www.mayoclinic.org/about-mayo-clinic/care-network/about
You may be interested in this information about travel safety for medical care:
– Coronavirus travel advice https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safe-travel-advice/art-20486965
– Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

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