Unable to receive a dx, don't know where to turn next.

When I was in my late teens I was dx with tzetze's syndrome which has since become costachonditis. It flares up frequently with pain across my upper chest that is helped by my PT and DO. My rib cage and sternum are also involved. I do have autoimmune disorders. At this point in life I have a variety of heart problems and shortness of breath. It is hard to distinguish between heart and costachonditis pain! Keep being an advocate for yourself. I find researching helpful.

I had really bad chest pain and went to ER, but it was actually gastro related. Have you have any endoscopes?

Wow, that is so wonderful how the doctors worked together. I also had chest pain and the stress test showed angina. I was put on beta blockers which had terrible side effects until I had an angiogram which showed my heart was fine. I have had FM since 1982 and that was the cause, muscles around the heart squeezing the heart when I exercised.

Please see an infectious disease doctor. I had similar experience and symptoms. I was diagnosed with chronic lymphocytic leukemia and the Ebstein Barr virus was active again causing sever body pain, muscle and bone.
I had mono when I was 20 and was diagnosed in 2018 age of 68. Also,see if you can get genetic testing. It could be a rare neurological disorder. Unfortunately at the age of 50 I was diagnosed with hereditary nerve pressure palsy by genetic testing. Doctors don’t know about this disorder so they can’t figure out what is going on. I found a great neurologist and he did the genetic test which confirmed it. Causes so many issues.
My best to you and don’t give up. Be your own advocate!

Recent study at UCLA may be relevant for you @covidstinks2023
https://scitechdaily.com/zombie-virus-fragments-scientists-discover-how-covid-19-causes-severe-symptoms/
It may not have an answer for treatment today, but may help your doctor view post COVID in a new light and point a direction to future care.

Hi, Gabby. When I read your post, I could relate with many things you have experienced. It can be time consuming, stressful, expensive, frustrating, etc. when you have to do so much work to get help and find answers to improve your health and quality of life. Many doctors focus narrowly rather than on you as a whole person with connected systems when treating you which misses the whole picture of your constellation of symptoms. After many years (7+) and a lot of doctors/$$$, I was diagnosed and treated for iron deficiency (need to get a full iron panel blood test for this), small fiber neuropathy (punch biopsy on calf/thigh), spinal stenosis (congenital), degenerative disc disease, cervical spondylitic myelopathy (compressed spinal cord at C5C6 causing many symptoms), thyroid nodule/Hashimoto's thyroiditis/hypothyroid, alopecia areata, anxiety/depression due to chronic pain, sleep apnea, breast implant illness, etc. At first, I was tested for Multiple Sclerosis and autoimmune diseases/Lupus since I had a positive RA factor and ANA (and mother had Lupus/RA). That was ruled out but I was never told originally by my rheumatologist that I had thyroid autoantibodies in my bloodwork showing my body was attacking my thyroid. I started to have more symptoms after having my son (struggled with infertility so long but got pregnant naturally which is probably due to my thyroid). Pregnancy and viruses (like Epstein Barr which causes mononucleosis or the virus that causes chickenpox) can definitely trigger things. I had chest pain starting after getting the COVID vaccine (Pfizer 2nd shot) for months and thought I was having a heart attack multiple times. The chest pain would wake me up from sleep or be first thing in the morning and started taking baby aspirin (kept next to my bed in case it was a heart attack). All of the cardiac testing came back “normal” but I certainly didn’t feel normal!! My recommendation is to have a full iron and thyroid panel, an ultrasound of your thyroid and lymph nodes. If something is suspicious, they should do fine needle biopsies of your thyroid and lymph nodes. Praying for you to get some answers soon!! Good luck and God bless❣️❣️❣️

P.S. More detailed bloodwork panels help to give a better picture of what might be going on. If something is showing as “normal” but you do not feel normal, your doctor really needs to listen to your symptoms. You could have “normal” range bloodwork but it may not be normal or optimal for you. My thyroid TSH was in the normal range but I looked at the history of my TSH results and it showed that it was gradually creeping higher which showed my thyroid had to work harder to produce more thyroid hormones. Also, the chest pain can be very scary, especially when you have a family history of heart disease/heart attack (my mother died at 67 of a heart attack while lying on an emergency room gurney)!

Sounds like a poor doctor. Find a new one or ones if multiple special issues

I have had many similar symptoms, have you been tested for celiac disease? Eighty percent of people that have this hereditary disease are not diagnosed. The average time to diagnosis is 10+ years. It is auto-immune and most that have it have other auto-immune disorders.

I would honestly find another cardiologist. Don't know the age of yours but mine is mid 30's and part of a larger group at CVI (cardiovascular institute) and he's a sweetheart. I am in Ocala Florida and there's a doctor here for everything that ails you. I would research them and find the highest rated with most positive feedback within your area. Good ones are out there you just have to find them.