MS is a disease of the central nervous system, which means whatever can go wrong, might go wrong. We’re talking about 10 rare or unusual symptoms you may not associate with MS. From hiccups to hearing loss, it’s not all in your head (it’s in your brain and spinal cord!) Plus, stay tuned to the end of the episode for my latest MS life hack.
MS is a disease of the central nervous system, which means whatever can go wrong, might go wrong. We’re talking about 10 rare or unusual symptoms you may not associate with MS. From hiccups to hearing loss, it’s not all in your head (it’s in your brain and spinal cord!) Plus, stay tuned to the end of the episode for my latest MS life hack.
Highlights
References:
Ardra Shephard:
I'm Ardra Shepherd and this is Tripping on Air, a place to talk shit about what it's like to have MS. Normally, I like to make everything about me, but MS also affects the people we love, so weighing in from the partner perspective is Alex Hajjar, my friend whose wife also has MS. Join us monthly, as we dish about everything from symptoms to stigma. If you have MS, or you love someone who does, we want to connect with you.
MS is a disease of the central nervous system, which means whatever can go wrong, might go wrong. Most of us know MS can cause fatigue, loss of balance, or difficulty with mobility. But today, we want to highlight the rare or unusual symptoms you might not associate with MS.
If you've ever asked yourself, "Is it MS or PMS?" "MS or is it aging?" "MS, or did I sleep weird?" 'Wait, is Mercury in retrograde?" This episode is for you. We're talking about 10 MS symptoms that prove it's not all in your head. It's in your brain and spinal cord. Get ready to say, "OMG, I didn't know MS could do that." Or, "OMG, I knew it was MS."
Alex, let's dive right in because there's a lot to cover. Did you know that MS can cause hiccups?
Alex Hajjar:
I didn't know that, actually. I had no idea that was a rare. Is it a rare thing?
Ardra Shephard:
I think it's rare, or it's definitely unusual. I feel like I manifested hiccups by preparing for this episode last night. I had a violent attack of hiccups, and when I have hiccups, I'm really dramatic about it.
Alex Hajjar:
Okay.
Ardra Shephard:
Do you have a cure for hiccups? I feel like everyone has a home remedy for hiccups.
Alex Hajjar:
Yeah. My old wives tale cure for hiccups is peanut butter. And if it doesn't really cure the hiccups, then I still got to eat some peanut butter. I just really like peanut butter, but since that's also kind of a mythic solution, I like to think that's my favorite.
Ardra Shephard:
But does it work?
Alex Hajjar:
Sometimes.
Ardra Shephard:
I've never heard that one. I think you made it up.
Alex Hajjar:
Yeah.
Ardra Shephard:
Sometimes it works?
Alex Hajjar:
I feel like sometimes it works, but it's really just a good excuse to eat peanut butter. I think because it's the stickiness, right? It's, you're like, you get it stuck in the back of your throat and it sort of interrupts what's going on.
Ardra Shephard:
I do have a cure for hiccups and it works every time, but it foiled me last night. As I said, I got the hiccups, I think preparing for this show, and then I had to pee all night because my cure is to plug my nose and then pound as much water. Just to drink, drink, drink, drink, drink water until I'm definitely going to drown and then that's it and it works.
Alex Hajjar:
I've heard of that solution before.
Ardra Shephard:
It works.
Alex Hajjar:
Flat water or fizzy water?
Ardra Shephard:
Oh my god, flat water. Are you insane?
Alex Hajjar:
I am, actually. If you mean-
Ardra Shephard:
Hiccups.
Alex Hajjar:
Yeah, okay, fair enough. Fair enough. I get it.
Ardra Shephard:
Hiccups are involuntary spasms of the diaphragm. MS hiccups are persistent. They involve disruptions in the neural pathways, that are responsible for regulating breathing and swallowing. So, I guess that's the explanation of how MS can cause hiccups, but everyone gets hiccups. I don't know that my hiccups last night were necessarily caused by MS.
Alex Hajjar:
Compounded by MS, maybe?
Ardra Shephard:
I'm really dramatic about it. Kerry will hiccup three times and then that's it. It's over. If I don't implement the water chugging cure, they don't go away. It's torture.
Alex Hajjar:
What's Kerry's solution? Does he just blink?
Ardra Shephard:
I don't know.
Alex Hajjar:
I don't get it?
Ardra Shephard:
He has an uncomplicated body.
Alex Hajjar:
All right. What's the next rare symptom of MS?
Ardra Shephard:
Hearing loss. So, about 6% of people with MS present hearing loss as their first, or presenting symptom. This actually happened to me. I had optic neuritis was my very first symptom. And then I don't know, within that same attack, maybe a week later, I lost not all hearing, but some hearing in the opposite ear to where I had the optic neuritis.
The good news. It was scary. It was quite scary but I was told repeatedly, "Hearing loss doesn't happen with MS. You must have something else." But it's not true.
Alex Hajjar:
Thanks for the good news.
Ardra Shephard:
It can happen. Right?
Alex Hajjar:
Okay. Yeah. Yeah.
Ardra Shephard:
That said, deafness caused by MS, is exceedingly rare, and most people who have that as a presenting symptom, do improve. I fully recovered. I have exceptional hearing.
Alex Hajjar:
Oh, okay. So, it's not necessarily a permanent thing?
Ardra Shephard:
I mean, never say never. I think MS can do what it wants. Right?
Alex Hajjar:
Yeah, but I'm just saying it's not definitely a permanent thing. It can go away.
Ardra Shephard:
I had full recovery and that symptom has never come back. It's been more than 20 years. I don't know if this is MS or not, but I feel like I blame it on MS. I do sometimes get this weird sensation where I feel like I'm breathing through my ears. It's really hard to describe and anytime I've mentioned it to a doctor, they just look at me like...
So, if you are watching or listening and you've had ear breathing, please reach out. I need support. I need to know that it's real.
Alex Hajjar:
There's something here about sudden uncontrollable laughter or crying. What's that all about?
Ardra Shephard:
That is the pseudobulbar affect. So, I don't actually know statistically how common or uncommon this symptom is, but it feels like it would be pretty disturbing, pretty upsetting.
So, this can happen. You can spontaneously burst into tears or laughter, despite feeling possibly the complete opposite emotion, which can be really frustrating and confusing for anyone you're interacting with.
It sounds like a really troubling symptom. I'd love to talk to somebody who experiences this. There are treatments that can help reduce these emotional outbursts.
Alex Hajjar:
Are they behavioral treatments?
Ardra Shephard:
Medications.
Alex Hajjar:
There's medications for this? Okay.
Ardra Shephard:
Yep. I mean, I feel like with most of these medications that help MS symptoms, it probably takes the edge off. I don't know if it cures it entirely, but it's not a symptom I've had. I mean, I certainly understand emotional outbursts. I'm good at them.
Alex Hajjar:
But I think anything you can't control becomes scary, even if it's a laugh. Especially if it's in an awkward moment, that would be terrifying.
Ardra Shephard:
That's part of the difference is that the affect doesn't match the feeling. So, if you want to get really angry, but you're actually laughing, or if you're right, I feel like that would be...
Alex Hajjar:
Just to think of it kind of sounds like it would be something. I don't know, maybe in a sitcom you wouldn't necessarily think this is real life. The opposite of what you want to express is happening and if you can't control it becomes all the more worse. I guess this is quite rare though, this sounds like. I've never even heard of this, to be honest.
Ardra Shephard:
Really?
Alex Hajjar:
Yeah. I've never heard of it. I mean, I've heard of people being overtly emotional, whatever, or having these outbursts, but I haven't heard of a symptom of it as it being a symptom of something or a symptom of MS for that matter, so that's interesting.
Ardra Shephard:
I think it's another one of those that, I don't know that it's necessarily rare so much as it is uncommon. I don't know. Drop us some comments if you're experiencing this and what it's like because it's possible that people are experiencing some of these symptoms and not really knowing that they are MS symptoms, and it is something that you want to bring to your doctor's attention because there are things you can do.
Alex Hajjar:
Yeah, it's good. We're doing a bit of data collection here, I think as well, right? And there's strength in numbers. The more people that speak up, even if you're halfway across the world, it's more evidence that this is a thing and this is real. Right?
Because we've discussed in the past how sometimes you'll go to a doctor and they might just say that this is not, where they're gaslighting you to extent, but having more people who have this, is a helpful number thing. Right?
Ardra Shephard:
Yeah. And we're talking about 10 symptoms today, but when I was doing some research for this show, there are so many more rare and wacky things that can happen, and when you think about it, it makes sense. Right? Central nervous system controls the show. It's in charge, so you can see how anything can kind of go haywire at some point.
Alex Hajjar:
The crazy thing I find about the central nervous system, and I'm doing it now because I know what's coming next, but it's all over your body, so it's everywhere and it affects everything.
And what I'm doing right now, if you're just listening is, I'm scratching my arm because the next rare item we're going to talk about is something itchy. Right?
Ardra Shephard:
Oh, I was just to scratch my head. I'm like sitting on my hands to keep from scratching. Yes. The technical, I guess medical term, I'm not a doctor, is pruritus, but it's basically pathological itching, which is a form of dysesthesia, which is sensory disturbance, which we all, or not we all, but many of us have experience with. I think it's kind of like a mind fuck where I'm asking my husband, "Is there something on my back? Is there a slash across my back?" I usually experience it as pain. Sometimes my feet feel wet. But this specific kind of sub symptom I guess, of pathological itching, just sounds I have to scratch.
Alex Hajjar:
So, just for the totally, maybe I'm going to really dumb it down for myself. Pathological is like all the time this is happening? Or is it?
Ardra Shephard:
Incessant itching. It sounds like a form of torture, really.
Alex Hajjar:
But it's happening all the time or it's infrequently, but when it does happen, it's super intense?
Ardra Shephard:
I think it can be both. I think it can kind of be all the time, or in intermittent. Obviously, you want to get to the bottom of it. It's not going to be relieved by antihistamines if it is caused by MS. If you have dry skin or allergies, then some moisturizer and some Claritin might help. So, you want to make sure. Just because it can be MS doesn't mean that it necessarily is, but I think you would probably know if you were just itchy all the time. It sounds so awful.
Alex Hajjar:
Well, moisturizer or olive oil based whatever, is not going to solve the central nervous system issues that you're experiencing.
Ardra Shephard:
No. This is a situation where you would look to medications like gabapentin, that might be helpful. Again, not a doctor, but you should talk to one if you have this symptom. Sounds super unpleasant.
Do you ever wake up with some weird symptom and feel like, "Oh no, do I have MS too?" Like that phenomenon that happens with med students, that hypochondria that comes with this heightened sense of self-awareness?
Alex Hajjar:
Yeah. I was totally going to say I'm a bit of a hypochondriac sometimes and it's with anything. If I start, I don't know, if I feel warm when I go to bed, I'm like, "I'm usually cold and this shouldn't be happening. Why am I so hot."
Ardra Shephard:
Maybe you're in menopause.
Alex Hajjar:
Maybe. Yeah. I don't know. MS symptoms I've woken up with; fatigue, heat exhaustion. I go to stretch first thing in the morning and I get a violent charlie horse. I feel like those all qualify. I've heard of all of those things happening and that would be what freaks me out.
The first thing I think I'm like MS, or I've got some, what are they called? Something in your eye? Those little wormy things. I don't know what they're called now. Floaties. Little floaties. Have you heard of this?
Ardra Shephard:
Yeah. Well, that's one of the symptoms, actually.
Alex Hajjar:
Yeah, but I think you can get them and not have MS. Right? And so when I see them-
Ardra Shephard:
Of course.
Alex Hajjar:
I'm like, "Shit. What is happening?" So, yes. I've woken up with things and been instantly paranoid that I might have it.
Ardra Shephard:
And is Nicole just like, "Shut up, you don't have MS."
Alex Hajjar:
She's like, "Can you just make coffee and we'll talk about it later?"
Ardra Shephard:
In 10 minutes, when your symptoms resolve?
Alex Hajjar:
Yeah, and I've totally forgotten everything. Yeah. Yeah. A bit of a hypochondriac. I'll admit it, for sure.
Ardra Shephard:
I think that that's a thing that can happen. I think it's happened to Carrie before also, where I think it's natural. You've got to keep it in check.
Alex Hajjar:
And friends I talk with regularly, who are also partners of people with MS and stuff like that, it's the same thing. You have pain all of a sudden in a certain part of your body and you're like, "Shit. Did I catch it?" You know what I mean? Obviously, doesn't sound nice or anything, but it's like that's where your mind goes, I feel like.
Ardra Shephard:
I think it's natural when it's something that kind of consumes the house, 24/7, for it to be on your radar ,for sure.
Alex Hajjar:
I just want to say because it's not something that you're necessarily, it's not there when you're born with or something. You know what I mean? It kind of comes out of left field, right? So you're like, "Is it happening to me now? What the fuck?" So, that's the paranoia, but yeah, we should move on. Sorry. I don't want to scare people now.
Ardra Shephard:
Yeah, because I guess the point is we don't want to create paranoia. If you are otherwise healthy, don't freak out. Headaches, for example, are pretty common in MS, but they're also pretty common in everyone. So yeah.
I'm thinking of a friend of mine, shout out Chantel, who read an article that I had done for a magazine earlier this year, and it listed a lot of symptoms and she was also like, "I have all of those." She's fine. She's okay.
Alex Hajjar:
Right. Yeah.
Ardra Shephard:
I don't know what number we're on, but osteoporosis could be considered a comorbidity of MS. So, possibly not caused by MS directly, but there is some research that suggests MS itself, might also cause osteoporosis. Our bones are constantly repairing and renewing themselves and the inflammation seen in MS, may affect this process.
On top of that, you are at increased risk if you have MS and you are female, you've had a lot of steroids, like I have, that reduced exercise. All of these things, I myself, received an osteoporosis diagnosis at this tender age, a couple of years ago after I fell and fractured my spine. And actually this is not that rare. One in five people with MS actually have osteoporosis. Two in five have osteopenia, which is the precursor to osteoporosis.
Despite how common this is, it's probably not on your neurologist's to-do list, monitoring for osteoporosis. So, this is one of those areas where patients can take control and you need to talk to your family doctor about your risk factors, so that they're monitoring for this early, which means doing vitamin D blood tests, calcium blood tests, bone density scans.
Many of us are on dairy-free diets to help with MS and that can mean that you're maybe not getting enough calcium. I-t's one of those things that you can have a big impact on, preventatively, and then it's hard because
Alex Hajjar:
I'm glad we never gave up cheese.
Ardra Shephard:
I mean, I have recently reintroduced dairy back into my diet for medical reasons. I like thinking of cheese as a health food and I'm chasing it with Lactate to see if that will help mitigate.
Alex Hajjar:
What's Lactate? Is Lactate just a pure form?
Ardra Shephard:
No, it's like a digestive enzyme that helps you process dairy a little bit better. I don't know if it's working.
Alex Hajjar:
Oh, right. Okay.
Ardra Shephard:
It's stressful because many people with MS, I am at considerable risk for falls and falls get a lot scarier when you might shatter your bones.
Next symptom.
Alex Hajjar:
Number six.
Ardra Shephard:
Formication.
Alex Hajjar:
Sounds dirty.
Ardra Shephard:
It definitely is. It's the dirtiest. Formication is the feeling of bugs crawling on your skin. Get ready to be itchy again. Like the itchiness, it's an aberrant sensory perception and I personally don't know what's worse, like imaginary bugs crawling on your skin or real bugs.
Alex Hajjar:
I mean imaginary is terrifying because you can't see them. That's gross. Actual bugs, I mean you could brush them off, theoretically, but I try not to get into many situations where I would have that many bugs on me. So, I feel like this is closer to something that I might experience as the sensation, but they're not really there and that's gross.
Ardra Shephard:
Formiction. It comes from the Latin, formica. Don't say you don't learn anything on this show, meaning-
Alex Hajjar:
Yeah, as in ants?
Ardra Shephard:
It means ants.
Alex Hajjar:
I feel like that's... Yeah, it's a name for ants. Right? Yeah.
Ardra Shephard:
This is why I'm an indoor girl. Who cares about MS?
Alex Hajjar:
Okay, so what do you feel though? There's an umbrella of sensory abnormalities. Right?
Ardra Shephard:
Yeah. So, it's kind of like we talked about with the itching, pain, burning. Sometimes my feet feel wet. It's like this in your head, not real. It's very unpleasant and very uncomfortable. I don't like it. Actually, sometimes-
Alex Hajjar:
And you've experienced this/
Ardra Shephard:
I do get this. It feels like there's something crawling in my head from time to time, especially when I'm really tired.
Alex Hajjar:
How long does it usually last for? I know everybody's different, but how long does it usually last for you?
Ardra Shephard:
Oh, it's hard to say. I feel it happens sometimes in the evening, when I'm tired, or when I'm hot. I feel like I can kind of make it go away by touching my head and just some other, drawing attention to some other sensation, if that makes sense.
Alex Hajjar:
Oh, okay. So, there's no medicine for it?
Ardra Shephard:
I think it would be the same kinds of medicines that you would use to treat, and again, I'm not a doctor, but I think it would be a Gabapentin or something. I don't take medication for it. It's not at that point for me. But yeah, I would again, love to hear from anyone who feels this all the time.
Alex Hajjar:
I think I was kind of mentioning number seven earlier. Is this the same thing where you get a sort of visual snow? This is a rare thing.
Ardra Shephard:
Yes. I mean I never heard it described the way you described it as an eye worm. Is that what you said? I don't know.
Alex Hajjar:
I think I've heard them referred to as floaties, but yeah, this might be somewhat.
Ardra Shephard:
Okay, that makes sense. I had this symptom, again with my first attack, and then never after. When I tried to describe it to my doctor, he did look at me like I was out to lunch.
For me, it probably had to do with the way I was describing it. It looked like I had a spinning wheel. It looked like the loading icon was constantly in my field of vision, which that icon is annoying enough, if your screen is frozen and you're trying to make stuff happen. It was in my field of vision the whole time.
It doesn't necessarily. It's not going to look like the spinning wheel for everyone, but some kind of thing. Visual snow, I think is what it's called, can be a symptom of MS. It can happen in conjunction with other visual symptoms. So, optic neuritis or double vision, those kinds of things.
Fortunately, it completely resolved for me. The blurriness of the optic neuritis never completely resolved but I don't have that.
Alex Hajjar:
When I read this, I thought visual snow was something kind of like if you close your eyes really hard for 30 seconds and then open them and then there's kind of all this noise going on, like what you see on the TV, that white noise? That's kind of what it made me think of. But the loading screen thing is interesting. That would be annoying. I hate waiting for those things.
Ardra Shephard:
Yeah. It didn't take over my entire field of vision. It was like one little spot.
Alex Hajjar:
Are you a late sleeper, or is insomnia a symptom, or rare symptom, or what is it?
Ardra Shephard:
So there's some theories here too, that over... Do I party hard? It depends what you define by partying,
Alex Hajjar:
Staying up to 11 and drinking a glass of wine, that's party hard, I think.
Ardra Shephard:
Drinking the hiccup water at 10 o'clock, that was throwing all caution to the wind. Oh my God.
Alex Hajjar:
I'm just imagining Carrie standing there like, "chug, chug, chug, chug."
Ardra Shephard:
Totally. Yeah, it sucks. Oh my god, it's awful. It happened to me once, right before I had to get on a plane, and I like to stay dehydrated before I have to fly because it's just a thing. But you can live with hiccups. Anyway.
Insomnia, more than 70% of people with MS have a sleep disorder. Pain; pain-somnia, I like to call it. Urinary urgency. Restless leg. The effort it takes to turn over in bed. All of these things can interrupt our sleep, but there is also some evidence that MS itself, may disrupt sleep and I believe it. I haven't slept through the night probably in 20 years and it's terrible.
It's really like Professor G says, "Sleep is probably the most performance enhancing agent we know." And that applies to everyone, not just people with MS. You know how good you feel after a good night's sleep and not sleeping well exacerbates absolutely every MS symptom. It sucks.
Alex Hajjar:
Yeah, I feel that a good night's sleep is critical. Right?
Ardra Shephard:
And this, I guess all this to say, if you are struggling to sleep, bring this up with your medical team, and who I to even say I haven't cracked it. I haven't solved it. I have done all the hacks.
Recently, I bought satin pajamas because I'm struggling to turn over in the night. It's like a whole multi-step protection. And so I thought low friction pajamas would help me turn over and they do. But they also, yeah, it's great until I'm getting up in the morning and then I slide off the mattress.
Alex Hajjar:
Right. Okay.
Ardra Shephard:
Onto the floor. I slid off the couch last night. It's like-
Alex Hajjar:
They're too slippery.
Ardra Shephard:
I solved one problem and it created another one.
Alex Hajjar:
You need to get just patches of cotton or something that interrupt, like on the back of the legs, so if you get up, you don't totally slip off. I don't know. I'm just trying to solve these problems.
Ardra Shephard:
You invent that, Alex and I will invest in it.
Alex Hajjar:
They'll look super dumb though, so don't expect to look cool, sliding off the couch. But we have actually a ton of machinery in our bedroom to help us sleep better and maybe it solves these problems.
We have a air purifier that was a COVID and forest fire thing that we started, but now we just do it all the time. We have a humidifier, so that helps not keep the room so dry and things like that. And then we each have a fan on our nightstands to keep cool.
It's weird. Our condo building, sometimes they turn off the heat and they don't turn off the heat until later in the year, later into the spring or something like that. And it's scorching outside and there's no AC because it's either AC or it's heat. So, we had to get these fans. We have one big standup fan and two little desktop fans for our bedroom. So, it's just constant cool air circulating but I sleep through the night and Nicole seems to mostly sleep through the night.
Ardra Shephard:
Does she?
Alex Hajjar:
Yeah.
Ardra Shephard:
I'm impressed. Good for her.
Alex Hajjar:
Yeah.
Ardra Shephard:
I also have a whole setup. We have the HEPA filter. I sleep with a sleep mask, blackout curtains. I make it cold like an ice box, but then I also take a hot water bottle to bed. Earplugs. It's a whole thing.
Alex Hajjar:
I know. I had to cave and get those earplugs that keep coming up on Instagram. They keep invading my life. I'm not-
Ardra Shephard:
Oh, the permanent ones? Are they any good?
Alex Hajjar:
Okay. Okay. I'll just say their name, but I don't want to endorse them necessarily. The Loop ones, but it's because they're so incessant and I found them a Facebook Marketplace, so I didn't pay Loop because that's annoying and I'm annoyed by their ads.
Ardra Shephard:
Okay. Wait, you bought secondhand earplugs?
Alex Hajjar:
No, no, no, no, no, no. They were in the box. They were sealed. They were sealed. They were just cheap. But those help and all of those things together, it sounds like you have to get suited and booted, just to go to bed. But I feel like it does kind of help. And if you're having trouble sleeping through the night, even I sometimes can't get through the night. But with these things, even I have alarm clock that wakes me up with light. That's more for the winter, where it's like pitch black every morning.
Ardra Shephard:
Because actually they say, they the famous they, that if you need an alarm clock to wake up that you are not getting enough sleep, that you're sleep-deprived.
Alex Hajjar:
I guess that's my diagnosis. I'm sleep-deprived.
Ardra Shephard:
Yeah. You should be waking up naturally. If you're getting enough sleep, you should wake up naturally.
Alex Hajjar:
I mean I do wake up naturally, but I mean I need one to get up in the morning to go to work, in the winter when it's unnatural. It's fundamentally unnatural. This is just an opinion, to get up at six in the morning.
Ardra Shephard:
We're supposed to hibernate for the winter, like bears.
Alex Hajjar:
Yeah. Let me sleep till nine. I'll start working at three. It's fine. I'll finish at 5:30. It's all good. Right?
Ardra Shephard:
Let's move on to food, Alex.
Alex Hajjar:
Food is my thing.
Ardra Shephard:
What's your favorite food? Are you a salty or sweet kind of guy?
Alex Hajjar:
Oh, I'm an all flavor kind of guy, but my favorite food right now, that I like to make and I enjoy eating as much as I do making it, is this Arabic breakfast dish called Foul, which just means fava beans. But it's super simple. It's like onions, tomatoes, garlic, lemon and fava beans. And it's like a stew and I usually eat it with some pita bread or some rice and it's savory, so it's salty I guess. And I make it every week and Nicole likes it and I can make enough for lunch next day. I love it.
Ardra Shephard:
It sounds delicious, but I'm questioning the breakfast vibes. Where does your coffee fit into garlic? Before or after?
Alex Hajjar:
Yeah. So, it's a culturally different thing I guess. But I'm sure because it's, I think Egyptians eat it the most. That's what I've heard. It's supposed to make you happy, that's why they say Egyptians are really happy people because they eat tons of Foul.
Ardra Shephard:
Well, they have good coffee, too. I just am like-
Alex Hajjar:
But Shakshuka is a breakfast thing too, and you see it a lot on lunch menus or dinner menus and you're like, "What is it doing there?" But I make it for dinner too, to be fair. So, it's good all times of the day, but I'm getting worried now because I feel like we're going to find something, a symptom that's not good for flavors, or something.
Ardra Shephard:
This surprised me and is upsetting. Long before COVID took away taste, MS can alter your sense of taste. So, apparently it is uncommon but not rare. 15 to 32% of people with MS, may experience altered taste.
I was following a University of Pennsylvania study, where MRI scans confirmed the MS lesions that were responsible for this horrifying symptom. In this particular study, 32% showed diminished salty taste; 25% experienced less sweet taste; 22% lost sour; and 15% were missing bitter.
Wow. My heart goes out to anyone who has this symptom. At least I think with COVID, taste comes back, so I don't know if anyone is experiencing this. It's interesting to me too, that there's this breakdown of which tastes might be missing and maybe it's not all of them. I don't know. To me, it's just sounds, I guess I could live without sour but sweet and salty?
Alex Hajjar:
And I like my bitter thing too. I like a nice Campari Spritz. I couldn't really lose a taste for that, I feel like. But I lost my taste for 48 hours, so not really a long amount of time, but when I had COVID., I had lost a sense of taste and it was some of the most depressing 48 hours I've ever experienced. Like no flavor. Anything. And I wasn't eating super flavorful stuff. I couldn't. But even the soup and the salty saltines that I put in the soup or whatever, zero flavor, you're just drinking hot water and cardboard noodles. It sucked. So, my heart goes out to anybody experiencing that sort of stuff. That sucks.
Ardra Shephard:
I don't know if there are meds for that. I knew a guy, years ago, who had lost taste because of something that had happened during a dental procedure. And he said that he ended up just eating more because he was trying to... He never felt satiated from the food, which I guess can happen if you're not experiencing the whole.
And I'm wondering now also if smell probably can be effed up by MS too. I want to add that dry mouth can be a secondary or tertiary symptom of some of the medications that we take, maybe lack of hydration, these kinds of things, and that can hinder and impede our ability to taste. So, troubleshoot that. If you have dry mouth like work on keeping your mouth hydrated. And other than that, I don't know what else you can do, but I hope there's something. I hope there's some medication or that it's temporary or whatever because-
Alex Hajjar:
At least that it's temporary would be a nice assurance.
Ardra Shephard:
I can't imagine. This disease. Right? The worst symptom is the one you're going through, at any given time. It's hard to say.
Alex Hajjar:
All right, fair enough. Fair enough.
Ardra Shephard:
We did do an episode called, The Worst Symptom of MS, which I recommend you check out. Spoiler alert, it's fear, which I guess is kind of hand-in-hand with this last symptom. And I think it's important for us to bring it up because it's not something that's talked a lot about and it could be something where you might benefit from getting some medical attention.
So this symptom is PTSD, or post-traumatic stress disorder, which is often the result of receiving an MS diagnosis, which we all know can be a very scary time. Some people might find relief in the diagnosis, depending on what you've been through to get to that diagnosis. But for others, it can be a really traumatic event and can cause actual PTSD.
Alex Hajjar:
Yeah, and it kind of sounds like there is some overlap between MS and symptoms of PTSD. Right? So ,things like insomnia and anxiety, fatigue, cognitive function. These are all things like they seem to be parallel and both. And so an MS diagnosis, I think it can hit you a brick wall. Right? So, it's not cool, but it's unsurprising a little bit, I guess from the outside, to hear that PTSD may be triggered by MS because it is shocking to hear that. Right?
Ardra Shephard:
And I think every symptom we've talked about today on this list, could possibly be caused by something else. So, it is important to know your body and to tease apart symptoms, so that you can make sure you're managing everything, as best as you can.
Alex Hajjar:
We ended the last episode with a dollar a day habit of keeping warm and I feel like I want to stay on the life hack tip. So, do you have another one?
Ardra Shephard:
I Sure do. Alex, I feel like I am the last person to this party, but I have changed my life, since we last spoke. I have been struggling in the mornings. Mornings are a difficult time for me and I find making the coffee to be essential. I need to put coffee into my body but it takes a lot of effort and energy.
I was making French press coffee, which requires boiling water. I spilled boiling water on my hand a couple of months ago, just struggling in the morning, the weight of the kettle, all this stuff.
So, my husband started making the coffee for me in the mornings before he left for work and it was lovely and a great help. But I don't always, it's great, but if I don't get up right away, then the coffee is cold and it's not that great and then you have to clean the French press.
Alex Hajjar:
I'm glad you're a hot coffee person.
Ardra Shephard:
Yeah, I need my coffee.
Alex Hajjar:
I'm a hot coffee person.
Ardra Shephard:
Scalding,
Alex Hajjar:
Right. Same with me. Nicole's not like that. I make coffee. We make coffee every single morning. We make it in the same pot, but she's cool with having a cold, so she kind of just chills on it.
Ardra Shephard:
Nespresso machines, I always thought they were super irresponsible. I just learned that they're actually the most sustainable cup of coffee you can buy and they were on sale. And now, I just push a button and my coffee is done, and hot and ready, and delicious and beautiful. And thank you Nespresso for being amazing.
Alex Hajjar:
Is there a link to this, how responsible it is? Because I'm sort of under the same understanding that it's kind of wasteful.
Ardra Shephard:
I really thought that also. I was reading an article in Fashion magazine actually, their sustainability issue, and they did some research. I will put this in the show notes, but it is the most sustainable cup of coffee. From the way they harvest the coffee to how they recycle the pods, they're killing it. And I got the machine on sale and it's changing my life and it's making my mornings good.
Alex Hajjar:
Nice. That's perfect. I mean, I'm kind of jealous of how easy they are. When I go to people's houses, they're like, "Oh, you want a coffee?" "Oh, only if you're making them." That's the typical response. And then they're like, "Oh, don't worry. It's like a machine, Nespresso or whatever, the other Keurig one." And then I'm like, "Oh, wasteful."
So, I'm jealous because it's so fast and it's right for you. It's just one coffee. But the other hand I'm like, "Oh, sustainability." So, I would like to learn more about this.
Ardra Shephard:
It is sustainable. I'm going to send you the receipts.
Alex Hajjar:
But a part of me wants-
Ardra Shephard:
I feel good about it.
Alex Hajjar:
Nespresso or Keurig? Feel free to send me a machine, so I can test this out.
Ardra Shephard:
I don't. I can't speak for Keurig. I know that they have done the same. I don't know that they have the same program in place that Nespresso does, but I think Nespresso's kind of killing it.
Alex Hajjar:
So, the life hack is this instant coffee that's not like the typical freeze-dried powder crap.
Ardra Shephard:
Yeah, I wouldn't call it's not instant coffee.
Alex Hajjar:
It's the instant. How do we word this now?
Ardra Shephard:
It's a delicious cup of coffee and we've definitely... You know what? Everyone already knows. Nespresso is awesome. They don't need me to tell them. I think we need to move on.
If something new and strange is going on with your body, it's important to talk to your doctor. Whether or not symptoms are caused by MS, your complaint shouldn't be dismissed. Even if it is just MS, don't assume nothing can be done.
If you enjoyed this episode, please like, subscribe, all the things, leave a review. And we want to know what's the strangest MS symptom you've experienced? Leave a comment. We want to connect with you.
Thanks for listening to Tripping on Air. Don't forget to visit us at trippingonair.com.