@nikefourstar It sounds like it's time to get a battery of tests. Explain to your doctor that you are not able to travel from doctor's office to doctor's office over a period of months or years. Your doctor may then want you to go to the hospital since the testing there is available all in one place there. I would
urge the doctors to check your levels of magnesium, B vitamins, minerals and other nutrients, as deficiencies can prove fatal. You also need nutrients often in excess to fight infections and disease.
Some nutrient testing can be done by mail from home with assistance from Naturopathic Doctors who are more up on nutrient deficiencies than MDs.
Ask for documentation of your lab and test results. Sometimes you can get good online communications with doctors and hospitals, sometimes not. And some doctors may not be on the same communication forum and thus require written copies from you.
Also think strongly about who you want to act as your legal designee to handle your medical communications and affairs. The legal forms are available online or through your doctor but need to be signed, witnessed and notarized.....and your doctors and hospital need copies.
The privacy laws like HIPPA are such that the medical establishment cannot disclose any medical information to anyone unless they are given legal written authority by you. They will often only allow direct family to visit you. You must designate who is allowed what information and also for financial matters. If you do not have someone experienced to handle this look up a good fiduciary - someone with good credentials, not some thieving vulture.
Not something you want to hear I'm sure. Perhaps someone older you know will have more familiarity with this since they have gone through such scenarios with the seriously ill. If not, there are those who do this for a living, and they may be less emotional and more experienced in handling these matters than a family member who is likely to be overwhelmed already with work and other duties.
Hang in there. We are pulling for you.