The Medical Gauntlet

Welcome back.

We moved out of ancient history and into what I like to call the gauntlet.

Now, if you feel you're being seen from specialist to specialist and passed around and getting nowher, if you've had to fire doctors, this episode is for you.

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

Journey.

So I went to a neurologist outside of the VA because my hands were failing me.

At that time, we were looking at carpal tunnel in both wrists.

But luckily for me, this doctor was also an Ms.

Specialist.

Now, why was I seeing a neurologist?

Because of my wrists.

Well, unfortunately, at the time, I was smoking cigarettes and I couldn't even hold a cigarette for a long period of time.

My hand would just give out, and that was usually my right hand.

Now, if you remember from previous episodes, I told you that my left wrist was fused.

And that's why I was seeing the neurologist, is to get that fixed, because I was.

Well, my family was due to give birth to twins.

So I'm talking with this neurologist and we're talking about Ms. And that day, he didn't give me a diagnosis, but instead he started a process of ruling out what this wasn't.

We did MRIs, which is basically sitting in a tube for an hour, sometimes two hours, and just hearing the noise and having the face mask not even, you know, a couple centimeters from your nose, and being forced to lay there still and quietly, no movement at all.

That in and of itself is torture for me because I like to move around.

But then we also did a spinal tap, or as the medical world likes to call it, a lumbar puncture.

I guess that makes it sound better.

So I remember the lumbar puncture, and I still have dreams about it.

So we go in, and this was a civilian doctor, not a VA doctor, and we go in and the person doing it, the radiologist doing it, the first one got called away.

It happens.

It's a hospital.

The second one got called away.

So I was dealing with a third stringer radiologist.

And I remember lying there on the table and them sticking the needle in, and my left leg immediately felt like it was electrified.

Being electrocuted and on fire.

And with a spinal tap, you need to lay as still as possible, knowing that this needle is going into your spine and pulling out fluid.

So it took them five times to get this done.

On the fifth time, I told the radiologist, you either get this this time or I'm going to stick that needle in your head.

So he got it the fifth time, and I immediately felt nauseous.

And they sent me back to the recovery room, and my wife was there, and she said I looked like a ghost.

They left me there for hours because they need to make sure that nothing went wrong.

And no nurse came in.

I was, yeah, as white as a ghost.

And nobody checked up on me.

From my understanding, they should have been checking up on me, but that wasn't the case.

So I want to back up a little bit here and talk about the wrist situation.

So the neurologist sent me to a hand specialist and we did carpal tunnel surgery on both wrists, not at the same time, about three weeks apart.

And the reason why I wanted to get that done is because I wanted to be able to hold my babies and feel my babies.

That was a success.

But the neurologist said the hand specialist had said that the carpal tunnel nerves, instead of being round, they were flattened.

And he said that we could do this again, it's not a permanent fix.

But he would not do it more than one more time because the nerves were just.

They looked like if you take a straw and smash it down, that's what they looked like.

And they're not supposed to look like that.

So that was a success, relatively.

I knitted babies blankets for my babies to come.

And then I discovered the wonderful world of kidney stones.

I had three kidney stones.

Now, that's probably related to my gout that I had been diagnosed with by a VA nurse practitioner many years ago.

And so while my babies were crawling around the ground crying, there I was crawling around the ground in agony for about two to three weeks.

So doing some more MRIs with the neurologist, we're finding out that my body has been through a lot.

And we got sent to a entire for some nodules in my nasal cavity that may have been cancerous.

While at the ent, we decided to take out my tonsils.

Now, this is happening in my 40s, and if you've had your tonsils taken out as a kid, you know that, you know, ice cream and all that good stuff.

So we Went ahead with that surgery.

The nodules were benign, thankfully, and the tonsils were.

We removed them and my voice was, you know, okay, it's turned into the dulcent sounds you're listening to right now.

But then we did some more MRIs and discovered that I needed to have my C4 through C7 vertebrae fused.

So we went to a spine doctor on that and took care of that.

And because of the MRIs, we found a fistula in my brain, and that's a abnormal connection between arteries and veins.

And it required embolization, which is basically super glue fixing these things.

So for now, in.

For predictably or possibly the rest of my life, I will be smelling burnt vinyl.

I have a vinyl collection and it kills me to smell that all the time.

All these surgeries, all these MRIs, all these peeling back of the onion, that is Ms. Basically, I was a walking textbook.

They at the imaging center, they knew me by first name.

I was a frequent flyer.

And with the hospital getting all these surgeries, again, frequent flyer and costing a lot of money, luckily I worked at that time and at the time of this recording, I still do work for the federal government.

So the insurance was decent, didn't cover everything.

But yeah, we took a huge financial blow for this.

And the thing of it is is that I still did not have my diagnosis of Ms. Now, in these new MRIs, the original three lesions were, you know, recognized, noted, but now there were more.

And even with a spinal fusion and brain surgery behind me, we didn't have that official stamp.

I was living in a gray area.

And my neurologist at the time wanted me to do every six months, MRIs, and he also wanted me to do a spinal tap.

And it was at that time that I fired my first neurologist because he told me that the pain that I had felt.

Spinal tap or.

And he kept on making sure I said lumbar puncture was all in my head.

And I told him, well, then you do it.

So we're still not at the point where I have an official diagnosis.

We're getting there, we're getting close.

But I don't know why I have these lesions.

I don't know why all this is happening to me.

And I just kind of viewed it as I have a ticking time bomb in my head and I don't know when it's going to go off.

And I'm not a huge one that likes surprises.

So I just if, if it's going to go off, go off.

But here I have a brand new family and I'm really not wanting to die from this, but that's where I was at.

And this gray area was, you know, like sitting in a waiting room.

Maybe you're in that gray area right now waiting for a name for your pain.

Just know that that name doesn't change your strengths.

It just changes the target.

It changes what we're going to do or what you're going to do in order to deal with this.

And I tell myself, you are not a series of broken parts.

Right now.

You feel like your body is betraying you.

It's crumbling in 10 different places all at once.

You think all these doctors are working at different outcomes, different things, but they're all working on the same thing, essentially.

You want to be patient with this because Ms. Is insidious.

It looks like a lot of other things, and you want to rule it out as much as possible.

And if you haven't been diagnosed, I hope that it doesn't turn out to be Ms.

I hope it turns out to be something that they can treat a lot easier than Ms.

But you need to be patient with this ruling out.

Process each mri, each treatment, each blood test, everything you're checking off something that it isn't.

And don't let that lack of official diagnosis, that living in between spaces, that gray space, make you feel like you're crazy.

The lesions are real.

The pain is real.

What you're going through is real.

The answer is going to come.

Just keep breathing through the kidney stones.

And this too shall pass like a kidney stone.

It takes time.

It takes time.

It's not something that you want to rush because the treatments for ms, if you rush, it can be pretty devastating, toxic even.

So take the time.

Don't let these surgeries, These procedures, these MRIs, these tests define who you are.

You are still you.

You are still amazing.

We just have to go through the process of eliminating what it's not.

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

Journey.

And I want to thank you for listening in because, yeah, I am not a big fan of going through this alone and sitting in waiting rooms alone and sitting in recovery rooms alone.

I want to thank you for coming on this journey with me.

You can find all the episodes@mysolomsjourney.com listen to them in anywhere you want.

And I will talk to you again real soon.

Thank you.