Producer: Aimee Bowen (00:00.93)

Welcome back to Nice Legs with Dr. Kamran, the podcast dedicated to leg health. I’m producer Aimee Bowen and today we’re continuing our series on restless leg syndrome, a condition many are told they simply have to live with. Joining me as always is our host, vascular expert and pioneer in minimally invasive vein treatment, Dr. Kamran Goudarzi. And a very special guest, one of Dr. Kamran’s patients, Terri.

 

Host: Dr. Kamran Goudarzi (00:22.839)

Thank you.

 

Guest: Terri, Patient  (00:28.418)

Thank you so much. It’s pleasure to be here.

 

Producer: Aimee Bowen (00:31.832)

Terri spent more than a decade managing symptoms of restless leg syndrome with medication before discovering the true cause of her symptoms. And today we’re diving into her journey, which takes us all the way from Alaska to North Carolina to find a cure that her doctors said didn’t exist. Dr. Kamran, take it away.

 

Host: Dr. Kamran Goudarzi (00:51.214)

Again, it’s wonderful seeing you and I’m so glad we had this opportunity to do another episode of Nicely Exhausted Camera. And of course, this is one of the series of episodes based on restless leg. So today, I thought for this episode, it would be great to actually bring a patient who has been suffering from restless leg and happened to have, you insufficiency in addition, so they can tell their story through their own.

 

After meeting Terri and she was talking to me last week about her journey, I asked her if she would be kind enough to share this, her story, because I know there’s a lot of people out there who suffering from quote unquote, Ressus-Lex syndrome, who are stuck with that diagnosis. know, Aimee, you and I talked about this before, some diagnosis kind of.

 

Haters, they use this word, but you get stuck with it, like neuropathy, fibromyalgia, or restless leg syndrome. And the minute you’re given that label, unfortunately, even most physicians do not question that diagnosis anymore and don’t try to see maybe it is not, or maybe it is a combination of things. So I thought nobody would be better than…

 

right now, Terri, because she’s, I love the way she describes her symptoms. She’s very aware of her condition. She’s very smart from a medical point of view. And just listening to her, I thought it was just a fascinating story. So, Terri, again, very much appreciate you joining us. So having said that, Terri, if you could kind of tell me…

 

When was the first time you started having problems with your legs and you thought you might have restless legs because people don’t know the diagnosis, you’re symptoms, right? So what kind of symptoms were you having?

 

Guest: Terri, Patient  (02:44.662)

Yes, that’s a very good question. My significant other woke me up and said, stop kicking me. I’m like, I’m not kicking you. He was like, yeah. And so this went on for a little while and I wasn’t getting rest. I was always tired. My legs were just doing whatever they wanted to do. And so me and him talked and thought it would be a good idea to go see my primary care doctor.

 

Host: Dr. Kamran Goudarzi (03:12.654)

Was this when you were in Alaska? Because you were there for about 25 years. this is how many years ago was it when you had this symptom? 15 years ago. Yes, so you were basically running the marathon every night and your yes, all they have was not getting much rest So you decided let’s do something about it for the sake of both of you

 

Guest: Terri, Patient  (03:14.766)

Yes, in Alaska. 35 years.

 

Guest: Terri, Patient  (03:23.051)

at least 15.

 

Guest: Terri, Patient  (03:33.608)

No, he was not very happy.

 

Guest: Terri, Patient  (03:39.598)

Correct.

 

Host: Dr. Kamran Goudarzi (03:40.31)

Okay, so you went and see your primary care physician.

 

Guest: Terri, Patient  (03:44.204)

Yes, and he diagnosed me with restless leg syndrome, put me on medication for it, and told me there was no cure. They did not know what caused it, but they had medication to help it. So that was my start of medication.

 

Host: Dr. Kamran Goudarzi (04:06.542)

And then what happened after that? Did it cure you? Did it make you better?

 

Guest: Terri, Patient  (04:09.486)

No, it did not cure me. Whenever I had anything to do that day, that evening, I had to make sure I had my medication. And so what I ended up doing is moving down to North Carolina. And I thought to myself, different doctor, different primary care, let’s see, is it really restless leg syndrome? And I was told the same thing. Yes, it’s restless leg syndrome. We’re going to increase your medication and there’s nothing we can do about it. You have to live with it for the rest of your life.

 

and be on medication. I was not real thrilled with that response. The medication was making me sick.

 

Host: Dr. Kamran Goudarzi (04:47.138)

What way was it making you sick? What way was it bothering you?

 

Guest: Terri, Patient  (04:51.234)

The medication would make me groggy in the morning. I felt swollen, my fingers, everything felt swollen. Had a hard time getting my body to move again. The increase in the medication did help me go to sleep, but I would wake up two hours later and maybe take a little bit more. It did not cure my legs. It affected my quality of life as far as

 

It started to affect me when I was driving. If I was sitting down in the recliner to watch a movie, I was up every five, 10 minutes. My legs just wanted to do their own thing.

 

Host: Dr. Kamran Goudarzi (05:31.02)

Are you getting any swelling of your legs at all?

 

Guest: Terri, Patient  (05:33.588)

Yes, and that’s a very good point. My shoe size… flying. I could not fly. It bothered me so much. But my shoe size actually went up from one size to the next.

 

Host: Dr. Kamran Goudarzi (05:46.318)

You could tell that there was definitely something going on.

 

Guest: Terri, Patient  (05:49.046)

I could, I could. And the swelling, it was so gradual, it was a little difficult to recognize at first. But once I did, I made some changes.

 

Host: Dr. Kamran Goudarzi (06:02.606)

So we were getting some swelling, were getting restless legs, were you getting any charley horse or night cramps?

 

Guest: Terri, Patient  (06:09.708)

I was getting a few cramps at night, once in a while a Charlie horse. My biggest issue though was the restless leg.

 

Host: Dr. Kamran Goudarzi (06:19.246)

So at that time you felt you know just in using the medication wasn’t really helping if anything you were treating side effects of the drug was getting more and these are very good doctors who were making that diagnosis. So but you felt you know maybe you should get another opinion and how did you how did you up coming and seeing us.

 

Guest: Terri, Patient  (06:39.768)

First of all, I was not happy being told I had to take medication for the rest of my life that was making me sick. Physically, in the mornings, I was sick, but it also had me concerned. Is this affecting my liver? Is it affecting my kidneys? And I only have one kidney, so I need to be very careful. And while I was doing that, I started to do research. I came across a lot of information about Restless Lake Syndrome, and from there, I was able to get in contact.

 

with you, Dr. Kamran.

 

Host: Dr. Kamran Goudarzi (07:11.118)

we came to this office, obviously, we did some tests and we find out that you do have venous insufficiency. It doesn’t mean you don’t have restless leg, but one of the differential diagnosis of restless leg is vascular. So we did find that you had some venous insufficiency and we did put your compression stocking, which kind of helps it a little bit. Sometimes it doesn’t help it at all. But then the bottom line is ultimate.

 

As I said, proof of the pudding is when you had your veins treated. And that was when it got me very excited because as a physician, you want to really feel you made a difference. So that’s why it was so exciting to me when you came back and you said, so how is your restless leg now? So you can tell us the rest of the story. You’re not taking the medications.

 

Guest: Terri, Patient  (08:00.664)

No, absolutely not. Once I started treatment, I started to see at first there was immediate improvement. The swelling gradually went down. The compression holes, they helped. And then as we got going through, I noticed breast slag is no longer bothering me.

 

I’m able to sit and watch a movie longer than five minutes or drive my truck longer than, you know, 10 miles. So my quality of life from that point started improving tremendously.

 

Host: Dr. Kamran Goudarzi (08:37.741)

The signs and symptoms, particularly the symptoms, are very similar to venous sufficiency. And we said in one of our podcasts that venous sufficiency can affect up to 40 % of the population.

 

Whereas, wrist’s leg, when you look at it statistically, is about 7%, so one should, think the top of my list would always be, could this be venous sufficiency? And whereas before we couldn’t really treat venous sufficiency with, think, in the operating room, do some major surgery, now it’s become so much easier to do, essentially risk-free. But if the sucking helps, then we say, okay, well, there we are.

 

Obviously because the stocking doesn’t do the same thing as doing the actual procedure. Sometimes it’s funny when you read the literature, some people say you should operate on them if you do not respond to their stocking. I’d really like to see a little bit of improvement from their stocking because that tells us we are in the right track. So the most important thing is 15 years or 17 years you’ve been on medication, we take care of your venous sufficiency, you’re off the medication.

 

And I don’t mean to be rewarding your mouth, but you are a lot better. The restless leg is pretty much gone.

 

Guest: Terri, Patient  (09:52.884)

Absolutely, absolutely. I feel like I have improved 99.9%.

 

Host: Dr. Kamran Goudarzi (10:00.15)

Fantastic. So is there still something going on, but nothing severe and the fact that you’re off medication altogether. That’s huge. think it’s wonderful. So we do this podcast just for the patients who suffer from this condition and also for physicians, primary care physicians, neurologists. As a physician, want other people to start, you

 

thinking about this diagnosis because venous sufficiency in one of study I read is one of the most under diagnosed or undiagnosed conditions. And we couldn’t really do a good job until roughly about 20 years ago, which in medicine is really not that long. so we’re learning that, you know, there’s by being able to take care of venous sufficiency, we can.

 

obviously improve the quality of life. And I think as a primary care physician or neurologist, I really like through these podcasts we’re doing to start our doctors to think twice. Especially when you say you’ve got to have this for the rest of your life, the rest of your life is pretty depressing and medications have their own side effects. You didn’t have just restless leg, you also had…

 

You didn’t have crabs. It’s funny because you don’t have to have all the symptoms. Some people have the crabs, some have the restless leg, which is fascinating to me. Swelling is pretty much most people have it and sometimes they don’t know they have it until they get on a plane ride. And that’s what I was asking. Alaska is a long flight. Yes. And after four hours, you pretty much get a lot of swelling in the legs and the rest is like worse.

 

That should make everybody a little suspicious. Maybe it’s venous insufficiency. And the danger of that is if you don’t know you have venous insufficiency, there’s a risk of getting clots and pulmonary embolus and that kind of thing. So what about the swelling? Is the swelling improved?

 

Guest: Terri, Patient  (11:53.026)

This swelling has improved tremendously. My shoe size has gone back to normal. And a good point you brought up about flying. I actually in November flew from North Carolina to Alaska. Not one symptom of restless leg. Not one medication for it. And I made it and it was great.

 

Host: Dr. Kamran Goudarzi (12:15.225)

That’s amazing. Another thing you told me, and I thought it was funny because you’re like, Dr. Kamran, why the whole state of Alaska and the state of North Carolina, we’re talking about the whole state, we’re not aware that RSS-LEC could be related to venous insufficiency. And that’s a very good point. And I think these are the two states you were in. How many other states in the United States are people forcing you to keep

 

taking medication because they are not quite aware that venous insufficiency could be contributing to this disease.

 

Guest: Terri, Patient  (12:51.822)

Right. Well, I think, in my opinion, the physicians need to talk to each other. I also think that your body works together. Each part works together with another part. I think that when you’re told you have to be on medication for the rest of your life and this is something that you’re going to have to live with, do the research. If you’re a patient,

 

talk it over with your physician. They may be unaware of the other options. And definitely ask the questions. And if you come to the end of your line and you know absolutely this is it, take action. Either pursue other options, find a different physician, or make the choice to live with it. And I was not willing to do that.

 

Host: Dr. Kamran Goudarzi (13:44.862)

And there are other complications associated with this. So people are not aware of, you over time, you can actually get large veins coming through the skin. They can rupture, they can bleed, you can get clots, can have skin changes. So there’s quite a few other potential complications. And it’s always nice to know everything which is wrong with your body. Now you might decide not to treat it, but at least know what is wrong. I was talking to one of my patients today, she said, Kamran said,

 

the older generation we were told never to question the doctor. Absolutely. It’s impolite. It’s what younger generations do. What we are trying to say here, and I’m the older generation, is that it is not impolite to question the doctor because most doctors, like, we are just as smart as what the patient tells us. And the longer I stay in this business, the more I realize how little

 

we know medicine is just an ongoing learning process and there’s never just one diagnosis. And I think it’s very important if you’re a patient and you think you’re not getting the results you’re getting.

 

So talk to your doctor and say, is it possible I could have something else? I heard someone said it could be venous insufficiency. Do you think I have venous insufficiency? Do you think I need to have a consultation? Believe me, as a physician, I personally, always enjoy when patients talk to me about it and question me.

 

Producer: Aimee Bowen (15:18.53)

Thanks for listening to the Nice Legs with Dr. Kamran podcast. Stay tuned for part two to hear more about Terri’s journey with restless leg syndrome and how with the right diagnosis and treatment, she’s now 99 % symptom free. Catch up on the full Restless Legs series in our feed at scarlessveincare.com forward slash podcast and on YouTube, Spotify, Apple podcast or your favorite listening platform.