So many symptoms, but so many doctors are diagnosing me with different

Posted by sillyflossy @sillyflossy, Nov 3 9:16pm

The week after Fourth of July, I started getting very dizzy and nauseous and had no balance. I lived with it for about a month and then told my pcp what was going on? He tested my thyroid and I needed to up my medication. Still felt terrible. Then I got disoriented and forgetful. Went to the hospital and I had a MRI a CAT scan x-ray of my chest sonogram of my arteries. They diagnosed me with sleep apnea. But still felt terrible. Then I got diagnosed with colitis. Again in the hospital because I was so Dehydrated . For a period I had high calcium, Also, since I had Covid in January, I have had a heavy chronic cough with lots of phlegm that I can’t get rid of.
Now I can barely get out of bed. I definitely can’t drive anymore.
Can anyone explain why everything is falling apart in my body at the same time? My PCP can’t. What kind of doctor should I go to next? I can’t put these pieces together? I am 60 years old And was always very healthy and active. I think it’s been about 30 years since I’ve been sick. I really hope someone can steer me in the right direction.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

armalone | @armalone | Nov 4 2:50am

I’m only 47 sweetie and I have days I hurt so bad from my body flaring up and severe random sharp pains that seem to move around my body with burning pains. I have so many symptoms and they keep adding on the last two yrs. Now I feel like my brain is going hay wire. I can’t think straight, can’t concentrate, my mind is always running on over drive and I can’t remember anything. I have a lot of lost time and time lapse. I have very bad pain in my tailbone and lower back that shoots into my hips and numb my legs. I’ve had many times fallen from my left leg given out before I knew it and my right legs forgetting to step. I’ve been to so many doctors and have had procedures done such as epidurals, nerves abrasions in my lower back, EMG, skin biopsies, etc. Tests come back negative. Didn’t feel movement in my toes or pin picks in my legs in certain places I was told. Fell out of the shower over the tub hit my head on the toilet and hit hard to the floor. All bc of my legs randomly given out on me. I’ve had driving issues happen and now I don’t even drive. The family I had left me saying they didn’t want to take care of me though I never asked a thing and a old boyfriend came and got me moved me to another state and now I have to find all new doctors. Maybe they might know something more to help. Everyone is different responding to meds and their lists of symptoms. I know it’s terrible. I hope through this you atlease have someone that cares and is there for you when you need them because they know your not what you use to be. I’m just called a liar and told everyone hurts. They have no idea. It’s hard being alone wondering if eventually it’s going to take your life. I just want me back so badly but things just keep getting worse. I’ll pray for you and everybody else that has to deal with this nightmare. We all just want to live a life and not feel miserable every day. I feel like nobody’s ever going to help me get better. That is a really bad feeling.

Laurie, Volunteer Mentor | @roch | Nov 4 6:25am

@sillyflossy .
Welcome to Mayo Connect, it definitely sounds like you have had a tough year. It is always frustrating when your provider cannot diagnosis the problem. Sounds like you have had all the normal test, yet still no answer.

When PCP has done all they can do, it may be time to seek a 2nd opinion, but like you asked, where to start.

If want to follow up with Mayo, you can self-refer yourself or ask your provider to refer you to Mayo. The process starts with filling out the intake form or calling the Mayo Clinic location of your preference. Both can be found here: http://mayocl.in/1mtmR63

Based on your primary concern, the scheduler can help determine the best specialist to be seen by.

Has your PCP provided any suggestions on what to do next or advice about seeing a specialist?

sillyflossy | @sillyflossy | Nov 4 8:33am

No, he hasn’t.
I just got a result back for sleep apnea. It came back as severe. I’m eating to see if this is causing my issues.
I am def open to going to see you. I have heard wonderful things from a friend who goes there for his yesrly check up.
How does insurance work? Do you accept it? The ins I have is Aetna EPO

Thanks for following up with me.

Laurie, Volunteer Mentor | @roch | Nov 4 8:45am

In reply to @sillyflossy "No, he hasn’t. I just got a result back for sleep apnea. It came back as..." + (show)

@sillyflossy
You would need to contact Mayo or your insurance company directly about insurance questions. Each Mayo locations has different policies. See https://www.mayoclinic.org/billing-insurance/insurance

Do you have a follow up appointment to discuss treatment for the sleep apnea?

jlharsh | @jlharsh | Nov 5 9:36pm

It sounds like you do have a lot going on and feel horrible. Following up on your sleep apnea would be worthwhile. Also, what follow up will you have for colitis? Getting these two things under control just may help you a bunch!

I have systemic problems that I have learned all work together (or against each other). They have been super difficult to figure out. I can say that I found doctors I trust and their approach is to take one symptom at a time. It has been an absolute marathon but so, so worth it! It will be impossible to find and fix several problems all at the same time.

What helped me was to start a discipline of activity and diet, things I could control. My doctors took one problem at a time. They’ve been so wonderful to figure out what is happening and then, when I do what they tell me for one thing they can better pin down the next.

I agree that Mayo would be a wonderful place to help you.