Undiagnosed after 1.5yrs after many tests and specialists

Posted by jc123 @jc123, Jul 3, 2020

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

@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

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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.

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@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.

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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!

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@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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@colleenyoung

@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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@crittercaregal @colleenyoung As you know, Colleen, MGH is always rated second or third to Mayo, with Johns Hopkins or Cleveland Clinic being the other top contenders. There was actually one year when MGH was rated as #1!

Travel is such a problem now though. The info I have seen lists flying as being high risk but it says staying in hotels is generally low risk but to bring along your own disinfectant spray and paper towels to clean doorknobs and other hard surfaces – you can't be too careful.

@crittercaregal I would go to which top-rated place that is close enough to drive to if that is possible. If you are on Medicare you do not need a referral. Other than that you may need to have your PCP refer you if you want your insurance to pay.

I hope you can choose a doable plan soon to get the help you need. It's really miserable to live with health problems and not even know what is causing them. When you do make an appointment somewhere I hope you will post back.
JK

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Thanks for your support and rest assured, I'll keep you in the loop as circumstances unfold!

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@jc123 After reading your post about multiple surgeries and chest pains, my suggestion is to have an evaluation with a physcical therapist who is an expert in myofascial release. This is therapy that helps me a lot. I have thoracic outlet syndrome and I am a cervical spine surgery patient. All surgery creates scar tissue in the fascia which will make things get tight. When my neck and chest get tight, it does make my heart race, and it does cause anxiety. The nerves controlling heart and lung functions are exiting the spine in the neck/shoulder area, and tight tissue restrictions could affect nerves in close proximity. I have had chest pains with a fast heart rate, and used my hands to stretch and relieve the spasms, which lowers my heart rate. I'm not suggesting anyone diagnose themselves this way, and I had been to an emergency room with symptoms like this and breathing problems, and a heart rate over 100 beats per minute, and was found to have a chest infection with excess phlegm, and heart issues were ruled out. This was several years ago before COVID. In speaking with my physical therapist, she said that if I was having a heart related chest pain, I would not have been able to relieve it within minutes with self massage and she knew of my emergency room visits. I now use this stretching to prevent problems and to maintain normal lung functions and chest breathing movement. Other possible issues can also be something like thyroid disease. I have that too and take desiccated pig thyroid medications, and when that dose is too high, it causes anxiety, fast heart rate, loose stools, weight loss, etc. If that has not been checked, it is worth checking. My dose has changed over time, and been adjusted.

Here is our discussion about MFR. You can find a provider search on the MFR website. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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