Lost: Being sick and not knowing why wears on you

@toomanyoars I’m glad you felt safe ‘venting’ here on MayoClinicConnect. We all need to do this sometimes. Just know that we’re here to listen. You mentioned that there are limitations on finding answers. Are you anywhere near medical centers but your insurance doesn’t cover? Would you mind sharing what makes your doctor think you might have a tumor?

@toomanyoars You have been through the wringer. It's good you are taking a balanced approach regarding the recent investigation for your mysterious illness(es). Below I have linked three previous discussions with members that have been through similar situations regarding diagnosis identification. You may want scroll through the posts in search for information and member connection.

- In recovery. Too many symptoms. Autoimmune disorder? HELP! https://connect.mayoclinic.org/discussion/autoimmune-disorder-help/
- For anyone who still can't find a diagnosis https://connect.mayoclinic.org/discussion/for-anyone-who-still-cant-find-a-diagnosis/
- Undiagnosed and frustrated: RA? Lupus? https://connect.mayoclinic.org/discussion/hi-im-new-to-the-forum-and-want-to-share-my-journey/

May I ask when you will receive results for the possible tumor diagnosis?

@toomanyoars I can really relate to your feelings. I too had a problem that went undiagnosed for a lengthy amount of time. It was not as long as yours apparently, it was about 15 months, but in that time I saw many different doctors -- PCP (internist), hematologist, endocrinologist, but none of them figured out until I went to a neurologist. He suggested it was from my liver, and he was right.

What I learned from that was if I ever go a long time without getting a diagnosis again I will head to a major medical center, preferably a teaching hospital. Since then I have gone to Mass General in Boston for just about everything except my PCP. I live in southern NH so it is a bit of a distance but not too bad overall. Although my diagnosis was serious, resulting in a liver transplant, it was a relief to finally know what the problem was.

Have you been to a major medical center? If not is possible for you to do so?
JK

Hi. The closest decent medical center to me is a couple hours away. Insurance now a nightmare for me. I used to teach. Good insurance, loved my job more than anything but physically but was getting more difficult with the fatigue and pain primarily. Eventually I had to quit working. We live in a state where the medicaid/Obamacare has massive loopholes. We don't qualify for medicaid yet don't make enough for the marketplace so for me to have any kind of insurance I have to purchase 6 month policies, usually aweful insurance that covers very little and pray they will let me renew after the first 6 months. Last year they didn't. One of those use it and loose it situations. I honestly hoped that I could take a year off, get healthier and go back. That was three years ago.
As far as the tumor my physician is basing it as of right now until more blood work comes in on symptoms. Random BP spikes, flushing, sweating, headaches, abdominal pain and others.

Thank you for all of the info. I am supposed to get some of the blood work back tomorrow. Hopefully will get good news.

@toomanyoars I’m sorry to hear that being able to get better medical care does not seem possible. I sincerely hope that the care you are able to get will diagnose your problem.

I’ve heard that sometimes the big medical centers/teaching hospitals will take patients with no charge. Despite the distance have you tried speaking to them?
JK

Update: The blood tests were inconclusive for an adrenal tumor for the most part. Two of the tests he ordered weren't run and one came back with a negative result so he continuing down this course isn't productive. After a long discussion he agreed to send me to a new rheumatologist and endocrinologist. Right now I am fighting my insurance to cover because neither are in my area. They are both at a better hospital a couple hours away. Obviously I am a little frustrated, not that I want a tumor, that would make me insane but I want answers and the availability to get answers. He and I talked about going to Mayo and it not being cost affective right now. It's hard when you are in that rock and hard place when you are ill... no diagnosis but too sick to work and unable to get temporary disability to help pay for the medical treatment to get a diagnosis...living in a state where even though your income is minimal you can't get temporary assistance (Medicaid) to go to the physician and any decent insurance plans are too expensive so you pay less and pray it covers anything at all and accrue more and more medical debt. I had a pretty good life and a great career before all of this. I miss it but I am still getting up every day putting one foot in front of the other. It's just harder some days.

@toomanyoars I am so sorry to hear of your continued frustration. It makes everything so much more stressful, doesn’t it. You mentioned you’re fighting with your insurance company because of needing to see a physician at a distance. Do you think the doctor, who recommended the new physicians, would be willing to write to the insurance company or call saying this is the best and only option for you right now? Might be worth asking him/her. Will you try?

That's a really good idea. I will check with him and see if he is willing. Thank you

Sick & in pain for a year. Many tests. No answers

I am a 66 year old woman who has always been healthy until last March, 2020. I got a virus (covid negative). It took a while, but after a couple of months, I was back to 80-90% of normal. Suddenly, my b/p spiked 220/110, I was dizzy, my neck hurt, my blood sugar spiked. My thyroid went from hypo to hyper and back to hypo. It normalized with medication. My neck continued to hurt. I felt like I had a lump in my throat and my head had ocean sounds. I was on a high dose of 2 different b/p meds which leveled out the b/p, but I still had high spikes. I had several tests to find the underlying cause of the high b/p, but nothing was found. About 2 months ago, I started getting weakness in my legs. I felt like they were rubber. And then I couldn't stand up from a sitting position with pushing myself up. My hands started to tremble. Tests include: MRI of brain, lung x-ray, CT scan of thyroid and throat, neurologist did blood work testing for muscle disease, EGD. So much has happened in the past year, I'm not sure I've covered it all. Have I mentioned brain fog? And uncontrollable yawning 2-3 times a day? I've had 4 covid tests and antibody test. All negative. What is wrong with me!?