I first went to emergency rooms where they checked EKG, chest x-ray, and blood test for troponin/cardiac enzymes. I went to the ER dozens of times and they were always normal. EKG did not show up anything, nothing showed up abnormal on chest x-ray, and blood tests were always fine.
One hospital had chest CT scan to check for pulmonary embolmism - this was all clear. Hernia showed on scan but was told many people have this and mine did not look to be causing any issues according to doctors.
I then was admitted to one hospital for a cardiac stress test/echocardigram. This turned out normal.
I then saw another cardiologist where I had a full echocardigram done - normal except for mild regurgiation in 2 heart valves but cardiologist said this isn't really anything to be concerned about. Heart structure looked fine - no sign of serious heart disease.
I then had a CT scan of the heart done (angiography) and this was perfect with nothing in my arteries and no sign of heart disease. Heart structure appeared normal on this scan.
Wore heart monitor for several weeks with nothing serious detected; only tachycardia was picked up some of the time.
My mother had me go to multiple thyroid specialists including Mayo Clinic thyroid doctor where multiple thyroid blood function tests were performed along with 2 ultrasounds - thyroid tests were all normal with nothing abnormal found on my thyroid.
I went to ENT doctor (ears, nose, throat) - tests he performed while there were normal.
Went to dermatologist - I have molds since childhood that will later be removed but dermatologist said there is nothing medically concerning, so this test was fine.
Have visited dentist - no cavities - teeth appear fine.
Been to one neurologist - physical test done while there was normal. Then had EEG later performed which turned out normal.
Primary doctor has done blood tests to check for autoimmune diseases - normal. Inflamation test - normal. Vitamin D checked was low one month but Mayo Clinic blood test showed it was now in the healthy range. Vitamin B12 is normal. Though one time in hospital it was above the normal range for some reason even though I wasn't taking any B supplements at the time.
No blood found in stool.
Blood clot tests are always in normal range.
Lyme disease test - normal at primary doctor, went to integrative doctor with more comprehensive laboratory test which was also normal. So I think I can rule out Lyme disease.
Celiac disease blood test - normal.
Epstein bar virus - past infection, but not active, so normal.
Went to hepatologist - liver function tests in past emergency room visits and performed by hepatologist are always normal. Hepatologist checked for Hepatitus A,B,C - all negative. Iron saturation and more in-depth liver tests - all normal. Ultrasound showed hepatic statosis or fatty liver.
Ultrasound of pancreas appeared normal along with right kidney. Pancreas enzymes in normal range.
Hepatologist tested for copper levels in urine - high levels can indicate liver disease. Mine was lower than normal.
Ammonia test in ER visit was normal.
Hormones like testoterone and estradiol tested and are normal. Only abnormal one was DHEA which was 579 when normal range should be under 400.
Integrative doctor tested CD8/CD57 for immune system which was normal but in lower range of normal.
Emergency room visits and other doctors always showed kidney function to be normal. EGFR is fine.
CBC blood tests along with metabolic blood tests are always normal in the dozens of times I have been to ER and tested through primary doctor.
Glucose levels are almost always in the normal range, and Mayo Clinic confirmed it is not diabetes.
Had upper endoscopy performed by digestive doctor - esophagus is fine along with stomach. Nothing other than minor irritation in throat showed.
Was borderline anemic for a little while in 2020 probably from having so many blood tests, but all blood tests in 2021 show normal iron and hemoglobin, so it is not anemia causing my symptoms.
Urine daily output checked for several weeks - always in normal range.
Urine tests at ER are almost always normal except one time in 2020 a small amount of bilirubin was found in urine, but doctors said this is nothing to be concerned about. No protein found. Ketones found but this was because I wasn't eating much. Overall, normal urine tests.
Blood pressure tests at almost all ER visits and in-patient hospital are almost normal except when I am very nervous.
Blood oxygen saturation range is always 96%-100%. Most commonly it is at 97% and I have tested it regularly at home with a pulse oximeter.
Body temperature is always in the normal range, as I have never had a fever throughout any of these symptoms.
I have had two COVID tests - the second test was in hospital where they stick the swab way done your nose. Both tests were negative for COVID.
Tests for illicit drugs and tylenol, aspirin etc. is negative.
BMI (body mass index) is in normal range - 5 foot 8 inches and now around 145 pounds.
So does anyone have any advice on what you think I should be tested for next?
Thanks for your help.
Hi, I am sorry you are going through this. Your symptoms sound eerily similar to the ones I am currently experiencing, which began with a similar feeling of doom shortly after a routine arm surgery 3.5 months ago. I’ve had many of the same tests which have also come back normal, with a couple irregularities (low b12, mild anemia, etc) but nothing definite. As such, I am still working through the process so I can completely understand your frustration. I can also relate to how life altering this experience is as I have been unable to return to work except for a few hours here and there. Interestingly, I was also prescribed on adderall for concentration/energy issues several years ago, though I have been off of the medication for approximately a year. It sounds to me like your nervous system is severely out of whack, which is what is the doctors believe is happening with me. Some of your symptoms point to parasympathetic overload, and some to sympathetic overload. I have had events that feel very much like terrible panic attacks (these were 24/7 for the first few weeks post surgery- I literally figured I was going to die) but my heart rate actually went down during the events instead of increasing. I also have extreme muscle twitching and terrible jitters/nervousness with a really horrible sense of unease for much of the day. I am 48 years old and have no prior history of anxiety/depression/panic so it has the doctors perplexed. Have you been to a psychiatrist for evaluation? I have and was told my issues were medical and not to take any antidepressants. However, I am interested as to whether you have tried any SSRIs? The reason I ask is that I have read SSRIs help to modulate the vagus nerve, which is a main transporter of serotonin. May be with a shot. I can n tell you what I am trying, I have been getting acupuncture which has helped somewhat though is certainly not a miracle cure. I also visited an integrative health specialist who put me on meds and supplements to get my hormones and vitamins into the optimal range. Just because a lab value is “normal” doesn’t mean it is optimal. Each value is highly dependent upon what is really normal for the individual, so an integrative health specialist can help you get things back in balance. As for me, I’m taking the long approach of getting my body in balance, trying to decrease stress as much as possible, and setting my body up to heal on its own. The thing to remember is the nervous system takes a very long time to repair itself so we have to be patient. One final question, have you had an ultrasound of your gallbladder or a HIDA scan? I ask because you mentioned some jaundice. My endoscopy was mostly normal as was yours, but an ultrasound showed a sludgy gallbladder and a HIDA scan showed a very low (16%) ejection rate. I’m nervous to schedule the surgery as my last surgery is what kickstarted all of this for me, but the surgeon I met feels like the gallbladder could be causing a lot of these issues. However, the other docs I have talked to have laughed this off. One thing I’ve learned researching it is that a low ejection rate can make food sit in the stomach longer, which can cause gas build up in the stomach. If the gas gets to be significant, and if it gets trapped in the upper gi tract, it may be possible it is causing some of our symptoms. It sounds crazy I know, but there may be several factors at play causing an out of control nervous system response where every sensation is causing an overreaction in your brain. Good luck and please keep us posted!