What do you do when you have symptoms but no label for them? In Episode 3, we look at the dangerous "middle ground" of MS—the time between the first lesions and a formal diagnosis. Timothy Brien discusses the struggle of managing neuropathy with "solutions" like Niacin that caused more discomfort than relief, and the slippery slope of self-medicating with alcohol and pot to numb the pain.

In This Episode:

• The Niacin Flush: Dealing with the intense physical side effects of early medical recommendations for neuropathy.
• The Self-Medication Trap: A candid look at why alcohol and drugs are "false friends" when it comes to nerve pain.
• 2015: The Turning Point: How a decade of sobriety changed the way [Your Name] manages his RRMS.
• The Proactive Patient: Why proven medical methods outperform self-medication every time.

What I Would Tell My Younger Self Now

"I’d sit that younger version of me down—the one reaching for a drink to stop the itching and the tingling—and I’d tell him: Trust the science, not the substance.

I know the Niacin flush is scary and the hand numbness is driving you crazy. But self-medicating is like trying to fix a computer by pouring water on it. You aren't 'dealing' with the MS; you’re just making yourself a secondary victim of your own choices. Hold out for the proven methods. Advocate for a real DMT (Disease Modifying Therapy). Be a 'clean' patient so that when the doctors look at your symptoms, they are seeing the MS, not the hangover. You’ll need your brain for the next 17 years—stop poisoning it today."

This episode includes personal discussion of chronic illness, mental health, medical treatment, and the lived experience of multiple sclerosis. Listener discretion is advised.

Website: www.mysolomsjourney.com

Email Updates: Subscribe on the site to follow the journey

Produced by: TKB Podcast Studio

Thank you for listening to My Solo MS Journey. This is a deeply personal documentary of Timothy Brien's journey with Relapsing Remitting MS. The views expressed are Timothy's alone and are not meant as medical advice. This production is made possible by TKB Podcast Studio, where we help you lead through the noise with quiet professionalism. For more information on TKB Podcast Studio, go to www.tkbpodcaststudio.com to discover what we can do for you.

So what do you do when you're having symptoms but you have no label for them?

In this episode, we're going to look at the dangerous middle ground of ms, the time between the first lesions and the formal diagnosis.

I'm going to discuss the struggle of managing neuropathy with solutions, quote unquote, like niacin, that caused even more discomfort than relief.

The slippery slope of self medicating with alcohol and pot to numb the pain.

So in the last episode, we talked about symptoms.

This one, we're going to talk about the fix, or what I thought was the fix at the time.

I had lesions.

I knew about three of them.

They were all dime sized.

But I didn't have a formal diagnosis of Ms.

Yet, which meant that I was on my own to manage the pain.

So the doctors at the VA were looking at my hands from a accident that I had while I was in the Air Force.

And the numbness that I had in my hands was constants.

You know, one of the early recommendations was niacin.

Now, if you've never taken a high dose of niacin, let me describe it for you here.

It's called the flush for a reason.

After you take the niacin, your head, or at least my head, would have this rush feeling, not a good rush that comes from, you know, maybe having a little too much to drink or smoking a little something that you probably shouldn't be smoking.

I don't know.

Your skin turns red and feels like you've been dipped in boiling water and you itch from the inside out.

Now, this was supposed to help my nerves, but it just added a layer of burning to the numbness that I already had in my hands.

And it wasn't worth.

Let's just say the juice wasn't worth the squeeze for that.

And I didn't continue it for a long time because I just didn't want to deal with the flush.

Now, I'm not saying there's anything wrong with niacin.

It helps out some people.

I'm sure it does, but it.

It was not the medication for me.

And I don't know your dealings with the va, Hospital service, Medical service.

Mine were rarely good.

I only had one good encounter.

Well, I take that back.

I had two good encounters.

And a nurse practitioner diagnosed me with gout, which everybody else was like, oh, it's a bug bite or it's an infection.

She looked at my uric acid levels.

And immediately she knew what it was and gave me Alupurinol.

And I've been on that every day since.

And the gout attacks have been significantly reduced.

And who, who knows where gout came from?

You know, unhealthy eating, I would definitely say, is definitely my issue with it.

But yeah, when the VA docs, that's a whole other podcast right there, I'll tell you, I. I just don't trust them.

I've never had a good experience with them.

They don't seem like they're there for us.

So that's where my distrust of doctors probably begins and continues to this day.

But, you know, the niacin wasn't working.

It was just giving me this flush.

So I stopped taking it because I know better than any doctor, right?

So I looked at, you know, things that I thought would help the stress in my life.

Starting a new job at the unemployment office.

And keep in mind, this was.

And so we were really busy all the time and it was a stressful time for a lot of people.

And so I turned to, you know, drinking all the time and smoking a little pot here and there with my roommates.

And that went on for a number of years.

And I thought, well, you know, I'm just going to numb everything and I'll be okay.

But yeah, that alcohol was definitely masking the pain.

And that is a learned experience thing because that's how my parents mask their pain and that's how their parents masked their pain.

So dealing with that was fun to say the least.

It just, it wasn't working for me and it wasn't good for my family for me to be drinking.

And so I went ahead and stopped and I dealt with my Ms. Head on pretty much from that point on.

I didn't have a formal diagnosis at that time, but I knew that drinking wasn't the way for me.

Now.

You know, there's, you know, the other substances that I take that do make me feel good from, to make creativity easier for me.

But yeah, I, I don't miss drinking at all.

I didn't like it when I was in.

It made Me super dizzy, made me super out of control.

And, you know, maybe I'm a little OCD that way or controlling that way, but I don't like surprises.

I don't like to be, you know, out of control.

And, you know, I'm happy to tell you that if that's what you're using to numb and to deal with, you know, if you're newly diagnosed or you think you might have Ms.

I've already bought the T shirt.

You don't need to buy it.

I mean, from my experience, that's not the path to go down.

So what would I tell my younger self now?

I sit him down and, you know, as he's reaching for his drink or his smoke, I tell him, hey, you need to put that down.

It's not going to help the overall situation.

Learn about your disease, learn about the therapies that are out there for you.

Don't necessarily obsess over them, but learn what you can and do it with a clear head, because you're going to need it.

Because I can tell you right now, the brain fog is the worst thing.

And if you add alcohol and drugs to it, it makes it that much more difficult because then you don't know when it's a brain fog and when it's the chemicals.

I'm not saying, you know, go be a teetotaler or don't do anything but cut back, you know, get.

Get a little bit sober.

I. I'm not a teetotaler either.

I still play around with some stuff, but I do it when everything else is taken care of.

And, you know, if you're seeing a physician right now, let them know what you're doing.

Let them know any supplements that you're taking, so that way they can make the determination of what's going to work and what's not going to work.

Be honest with them about that because, you know, if you're drinking heavily and they're trying to give you something that doesn't mix well with alcohol, you're going to have yourself in a whole other world of issues.

So be honest with yourself and be honest with them about that.

This is Tim Bryan, and this is my solo journey, my solo Ms.

Journey.

Again, brain fog.

There you go.

Thank you.

I'm not going to edit that out because you need to hear me and hear what I go through, but I want to thank you for listening and joining me on this journey.

You can find all the [email protected] and I will talk to you next time.