Seronegative diagnosis and two rare genetic diseases

I’ve tried posting as a status and it it’s won’t go. It’s been a really crappy couple of months. I’m so over wheelmen. My genetic test for mitochondrial myopathy came back with multiple unclear variants so it’s a we have no idea. Now I have to go back to Chicago for a muscle biopsy which is going to suck. I lost my job. It’s gotten bad to where I can’t talk for long periods of time. It’s clear discrimination and j have to get a lawyer. They are refusing to acmoffate me anymore. Instead of cross training me for the chat team they fired me. So now I’m out of a job and insurance. I talked to my primary pain care Dr the other day. He thinks I have something called ompd which is another rare genetic disease . Im struggling. I can’t get my benefits from the states approved. I e been trying for months. I owe so much in my gas bill they keep threading to turn it off. I keep paying it and it never goes through for some reason. I had to stop taking the mestinon. It was tearing up my stomach and I couldn’t handle it anymore he put me on tacrolimus 1 mg twice a day and have to have labs drawn once a week. I’m about to loose my kind with all of it. I made myself get back to tai chi. But I’m struggling there too. My legs keep locking up during stretches and my leg won’t turn a certain way on the floor anymore. I was finally diagnosed with dusautonomia (pits) back a few months ago. I’ve had to increase my water and salt intake. I’ve been managing. But I keep blacking out standing up and that’s getting scary. I had to get a disabled license plate and placard. I just feel so defeated. Two steps forward two steps back. Still no clear diagnosis. My pain Dr is putting me on something called belbuca. It’s stupid expensive and not even in stores yet. But I want off tramadol. I’m popping them like m and ms trying to stay ahead of my pain and it’s not touching it. My pain care Dr agrees with me that this is something deeper than fibro. And fibro isn’t an accurate diagnosis anymore. Now I have someone actively looking for connective tissue disorders and muscle dystrophy’s. He’s worried. He patted my knee and said sweetie im so sorry. You aren’t the same person who came to me a year ago. And I said and what exactly does that mean? And he said a nice way of saying I see how worse you’ve gotten I can tell by how you walk. You need to use your cane more. And be super careful driving. We’ll get to her bottom of this though. And im changing up your pain management. That sentence broke me a bit. But he’s stepping up. And running s bunch of tests a remetakoghist would run. He’s been crossed trained and wants to r out everything else in his labs to help diagnosis me. I told him I’d go jnto medical bankruptcy if I had to to get a clear idea of what’s going on. I am desperate. I sound whiny. But I don’t have any friends I can really talk to. I’ve been seeing my therapist twice a month now because I just can’t anymore. I have no idea what to do with myself. Im running in caffeine and chaos. I’m so close to full burnout. Fingers and toes crossed that this medicine gives me some relief. He’s calling my dr in Chicago to talk and form a plan. I need a full care team now. I isn’t feel so defeated. Seriously what do I do? Where do I go for a full genetic work up? I am desperate for answers. And I won’t stop until I get them.