The Fight for Fast-Forward

Welcome back.

If you listened to the last episode, you know, my diagnosis day was a complete disaster.

I was left stranded in a parking lot on a Friday, 5pm with a new diagnosis and a dead car.

But the real fight started a few days later when I realized that the clinical notes from the teaching doctor.

That's the moment I realized I had to move on from being a patient to being a manager of my own survival.

My name is Timothy Bryan, and this is my solo Ms.

Journey.

A few days after that appointment with the doc, the numbness cleared enough for me to audit my own medical records.

Now, what that teaching doctor wrote made my blood boil.

He wrote down that I was refusing any medical treatment at all.

And that was a complete lie.

See, my family is a one income family and I have to work in order to keep my family together and, and have all the things that we have.

I wasn't gonna let anything get in the way of that and I didn't let it slide.

I called up the manager, the clinical manager, and I also called up the patient advocate and made enough noise that I caught the attention of the nurse practitioner who, he was deeply apologetic.

He called me up right away and he bypassed the system entirely and got me bumped up to the actual lead Ms.

Specialist at the same hospital.

And I thought my proper treatment journey was going to start right then.

I met up with the lead Ms.

Specialist and I was feeling really confident about everything.

And at the time I was working remote, but I knew that that wasn't going to last forever and a lot of people were working remote at that time.

So I made it known that, you know, sooner or later we're gonna have to go back to the office and when I have to do this drive back and forth and it's going to be, oh, two hours each way.

And at the time I was told, yeah, that should be no problem, we can write a note for you.

And then I was also given medication called Avaggio.

It's, I, I laugh about it because it's a funny name and it's, it sounds very bourgeois and abbagio.

And we were dealing with other issues that I was having at the time.

I got my first MRI of my complete spine and that's where we found more lesions in my spinal column.

They were in my brain.

We knew about those.

But now we're finding lesions in my spine.

We were also finding a lot of stuff with my lower back, a lot of issues, a lot of disc degeneration.

And I was having A lot of pain in my lower back.

Now, yes, I was overweight.

That's my fault.

And, yes, I didn't have a whole lot of energy to work out and work off that weight.

And it was decided that they had another specialist there for me to see, and they were going to burn out some nerves in my lower back.

Well, it was decided that they were only going to do one side, the left side, and they may need to do it again in a few years.

Both sides were hurting.

The whole lower back is hurting.

But it was decided we're going to do the left side.

And they did that.

And I got a little bit of relief for a month or two, and then the pain came back, And I wasn't too excited about burning out more nerves in my lower back.

So exhaustion was still an issue that I had.

And after we did a round of, you know, checking out to make sure that the lesions weren't growing or multiplying, after I was on a baggio for a while, which, you know, I tolerated a baggio really well, it was decided that they were going to put me on something called provigil, and that should, you know, give me enough energy so that way I could, you know, actually work out and not want to fall asleep every couple of hours.

So I remember taking that provigil the first time, it was on a Thursday, and I really didn't think much of it.

I was a little bit annoyed, a little bit ticked off that, you know, hey, I gotta have yet another medication.

And then it got to be Friday, and I usually go for poetry readings on Friday.

Well, I remember that poetry reading, and I got there after taking the provigil, and I just wanted to fight everybody.

I wanted to tear the place apart.

Heart.

The rage that was inside me was intense.

I haven't felt that rage in a very, very long time.

So I did what anybody would do, or at least what I would do, and I removed myself from the situation without saying much of anything to anybody, and I threw all my pills away.

This is something that a coping mechanism that is not the best coping mechanism, I will say that, and admit that.

But I didn't want to harm anybody.

And I felt that if I was on that for another day, somebody was going to die.

And it might have been my wife, my kids, some random stranger in the street, or taking my own life.

So at the time, that seemed like the most reasonable thing to do.

I messaged my doc a few days later and let her know what I did and what the outcome was.

And, of course, you know, they wanted to see me again and, you know, did I throw away the Aagio for some reason?

I did not throw the way at the Baggio because it's not cheap medicine.

Even with insurance, it's not that cheap.

So I let him know I didn't throw away the Baggio, but I threw everything else away.

And they said, well, you need to call your primary care doctor and see if they can reorder everything for you.

Yeah, So I went ahead and did that and it was not a good, not a good call to my primary care doc.

Well, at that time, I could see the writing on the wall that we were going to be going back into the office at some point in the near future.

So I brought up the, the issue of, hey, I'm going to need something from my docs, saying that, hey, Tim needs to, you know, stay remote.

And so I messaged in instead of, you know, setting up an appointment and all that kind of stuff.

And so I got a message back saying that they would not be providing me with that.

And it wasn't even from the doctor, that was from the new nurse practitioner.

And I was like, no, I need to speak to the doctor about this because this is something that we had agreed on.

And the Ms.

Specialist said, no, I'm not going to write that for you.

That's not going to happen.

I can't good conscience say that you can't drive, you know, two hours every day and be on the road.

So that's how I stopped taking a Baggio.

I had a good heart to heart with my primary care physician, the only doctor I haven't fired.

And I said, hey, listen, this is ridiculous and can I go to a different neurologist?

So I went to the next teaching hospital here in Virginia, which was down in Charlottesville.

And when I got there, I met up with the student doctor.

And I gotta say, you know, meeting up with student doctors, I'd rather deal with them than with the head dogs any day of the week.

So met up with him, gave him the whole history and said, hey, listen, I'm looking to get some help with this.

He said, yeah, that sounds, you know, really reasonable.

And he, you know, naturally had to bring in the teaching doctor.

Teaching doctor comes in and he says, why are you here?

And I explained.

He's like, I explained it, or I start to explain it to him and he goes, no, no, no, why are you here?

You already have a doctor over at vcu.

And as a matter of fact, she graduated from here.

She used to be here.

She Used to be my student.

I said, well, your student did this to me with pro vigil.

Your student said that she would take care of this, and then when it was time to take care of it, she didn't.

So that's why I am sitting here talking to you.

And he said, no, you're here to doctor shop.

And I said, well, you know, if you want me on the roads, you know, for two hours each way and all that, if you think that's perfectly reasonable, then you can take the risk for it and you can take the punishment for it.

If I run into a whole bunch of people and kill them while I'm driving, he didn't like that.

He said, that won't happen.

And I'm like, well, you know, I drove here from Fredericksburg and that takes about two and a half hours, three hours.

And you know, I. I can't obviously stay at this hospital.

I'm not going to stay at a hotel.

So why don't you tell me what kind of car you're driving and give me your driver's license.

Driver's driver's plot late, and I'll make sure that, you know, if I fall asleep or if I'm too exhausted to keep my eyes open, I run into your car and kill you on the road.

And then, you know, somebody can tell your family that's.

I was not happy.

He said, well, why don't you just move closer to D.C. i said, do you understand how much it costs to live up there?

And he said, well, that's not my problem.

You chose to live here.

You chose to live here.

And yeah, I probably chose to have Ms. Too.

It's not happy with him.

His student was just.

His jaw dropped and he said, well, we'll treat you here instead of vcu, but you know, we're not going to do that.

I said, I don't think I need to be treated here then by you.

And he said, well, we'll set up a follow up for you.

You know, you can think about this.

And I said, you don't need to set a follow up.

I said, you're fired.

So he said, what?

I said, you're fired.

You're not the first neurologist I fired.

And from the looks of things, you probably won't be the last.

And he storms out and tells the student, make sure he does a follow up.

Student apologizes up one end, down the other.

And I said, no, he's fired.

If you really want to do me a favor, let me know what kind of car he drives.

And I'll go slash all four of his tires and then set his car on fire.

Obviously, he didn't do that.

And no, I didn't have any provisional either.

So another year or two passes and my symptoms aren't getting any better.

So I talk with my primary care doctor again.

I said, listen, I'm going to give this one last go.

And he sends me down to Richmond again to a different hospital, it's not a teaching hospital.

And he says, you know, let's give it a shot.

So I drive down to Richmond and meet my, at the time of this recording, my current neurologist.

And he reads through all the stuff.

He's got access to all the records, all the doctor's notes.

He knows everything that's going on.

And he said, tim, I just want you to tell me your story.

And from jump, I tell him everything.

And I said, listen, I'm going to be checking your notes after this.

He's.

And he said, I can see you're very thorough.

You don't let anything, you know, get by you.

And he's like, listen, I understand how you're feeling as much as I can.

We are not this other teaching hospital.

We are not the va. We are not going to be sticking you with needles into your spinal column.

We're not going to do any spinal taps.

And we joked about that.

He goes, it's a spinal tap.

You know, lumbar puncture is a nice way of saying spinal tap.

And he said, I would like to try you on this new medication.

It's called mavenclad.

You take it for a week, then you're off for a month, then you take it for another week, and then you're good for two years.

And we do MRIs and we just keep track and make sure everything is good to go.

And that's where I'm at right now with medication.

I'll have another year to go and then I'll be able to do more mavenclad if needed.

Now, the unfortunate part about mavenclad is it kills your T cells, but it reprograms them, the new ones that come up in order to have your body not try to destroy itself.

Because Ms. Is basically your T cells are attacking your myelin sheath, which is the covering for your nerves.

So it's kind of like taking a electrical cord and shaving it a bit and wondering why you're getting shorts in it.

So we're hoping that this does well and that, you know, maybe if I go on to a.

Have to go through a second round of this, then maybe that'll be the end of it.

But the bad part is, is that when you're on it and for the next couple of months, your immune system is crappy.

And what happens in winter time?

Oh, yeah, flu season.

Well, because I'm taking this, I can't take the flu shot, and I got to make sure that I don't catch the flu because it could be very, very dangerous for me.

So just to keep score here, I've gone through three neurologists, I've gone through multiple medications.

I feel with this current neurologist that I have, and hopefully it's my last neurologist.

And, you know, we have a great working relationship.

Yeah, hopefully things are turning out really good.

And this good feeling that I have, hopefully it's not a mirage.

So now we get to go to the section where what I would tell my younger self now and, you know, it wouldn't be.

I'm not an old.

That much older than I was when I, you know, started these things up here in the recent past, as I like to call it.

But, you know, I. I would take a look at myself, you know, myself being exhausted, furious, just trying to argue my way to basic dignity in a clinic and say, hey, knowledge is your armor.

Documentation is your weapon.

Don't feel bad about auditing every single chart Note.

It's exhausting doing that.

It's just exhausting being alive.

But if you don't, it can cost you years of your life and time.

And I don't want to say the word cure, but something to alleviate the pain that you're going through.

Do your best to never meet a doctor alone.

Bring another person to bring notes or record the encounter.

And if you're in a single consent state, record it.

It's for your protection.

I. I would even say, even if you're not in a single consent state, recorded anyways, it's your protection against being gaslit by a broken system.

Your job is not to be a good patient.

Your job is to find a medical team that treats you like an equal partner.

Don't beg for accommodations from doctors who don't listen to you.

Get rid of them, fire them, and keep pushing until you find provider who will give you the fast forward treatments.

The future is brighter than you think, but you have to fight to get there and that's unfortunate, especially when you don't have the energy to do it.

So again, I'm Timothy Bryan and this is my solo Ms.

Journey that you're joining in.

Kind of late in the game, but that's okay.

I'm glad you're here and I hope you got something from this.

If you go to the website, you can see all the episodes that are here.

I'm planning nine episodes, but we may go longer than that.

We're getting close to the end here.

This is episode eight.

So we got one more to go.

You can email me timothykbpodcaststudio.com you can follow me on the website mysolomsjourney.com.

And I'll talk with you again real soon.

Unfortunately, you gotta fight, but it's gonna be okay.