C (3:01)

Yes. Some patients will often say, yeah, when I feel that, it's a little reminder that I have Ms. Yeah.

B (3:06)

Usually not painful though, right?

C (3:08)

Not painful, just weird or off putting perhaps, but it's very short lived and usually just for less than a minute.

B (3:16)

Yeah. And I sometimes see it like they'll bend their neck and it goes down their legs. Have you heard that from patients?

C (3:21)

Occasionally, yes. It varies from patient to patient.

B (3:25)

I'm sure you, like myself, would wish more primary care docs would be aware of this, because I think sometimes people report it to their doctor and then no one does an MRI in their spinal cord and years can go by of missing the early diagnosis of Ms.

C (3:38)

Exactly.

B (3:40)

So another abnormal sensation that's pretty brief frequently is excruciating face pain. And so there's a condition called trigeminal neuralgia. What's that all about?

C (3:52)

I have to say that pain in Ms. Overall is still a bit under recognized. It's at least 50 to 60% of patients have some type of pain. And trigeminal neuralgia tends to be unfortunately one of the worst symptoms. The trigeminal nerve is a large nerve that supplies sensation to the face. It has three major bifurcations and so you have it in the forehead, the cheek and in the jaw. And usually patients might say that they have this sharp pain along the side of their face. Face comes on very suddenly. Chewing, eating could trigger it. And in many cases it can often prevent patients from being able to brush their teeth or eat a meal. Some people lose weight because it's so painful and it has to do with lesions. Again, loss of myelin in the brain stem in the area that surrounds the trigeminal nerve. In some cases, it can also be related to a large blood vessel that's putting a little bit of pressure along the trigeminal nerve and it can come on very quickly, very suddenly, sometimes can last for weeks or a few months, and then can sometimes go away as quickly as it came. But for many people it is an intermittent. It can be quite long lasting, but very painful.

B (5:16)

Yeah. Some of my patients will describe, like this electric bolt of pain that maybe lasts 30 seconds or a minute with lingering pain afterwards, and then it can reoccur, you know, 10 times in an hour. So it can be really debilitating. Many of my patients that have had natural childbirth and kidney stones, they say this is by far the worst. It's pretty excruciating.

C (5:36)

It really is. You know, when I see patients in the office who have it, some people will come in with a scarf around their face because they're afraid that the air conditioning or a cold breeze can trigger it.

B (5:47)

I had a patient in yesterday, actually, I had some teeth extracted because they kind of went down this rabbit hole. You know, they think it's a dental problem. They go to the dentist, and the dentist starts going after teeth when it's really a nerve pain problem.

C (5:58)

Yeah. As he was saying with the internist, who might not be thinking about Ms. For the lamit sign. Similarly for the trigeminal neuralgia, since it often starts in the jaw, they first thing you think about is, well, I must have a bad toothache. But then they get their teeth taken care of and they're still having this bad pain. And then people start to put two and two together and think that this is probably neurologic.

B (6:23)

So, Marianne, how do you treat someone who comes into your office? Let's say they just had it for two weeks.

C (6:28)

So usually we try to start with some mild medications that have often been used in the treatment of seizures that are often very helpful to decrease this type of pain because they do help to decrease some of the pain transmission that's going on within the brain. One of them is gabapentine or carbamazepine, or the brand name for that is tegretol. And usually we try to start with a low dose and build it up as tolerated by the patient until they have pain relief or if they have side effects from the medications, because unfortunately, one of the side effects can be sedation, and so it can make some patients sleepy. Sometimes patients will say they feel a little loopy from the meds, but they really do help. The other thing is, often we'll do an mri. Sometimes an acute burst of this trigeminal pain could be an indication that maybe this patient is having an Ms. Relapse. So doing an MRI and looking to see if there's any new inflammation can be helpful, because then the patient may be treated with steroids, and that may help to alleviate the symptoms, too.

B (7:40)

Yeah, frequently I give a patient a course of steroids if it's new onset, because if we can get rid of the pain, that's the best way to do it. Although I don't always see a new lesion in the brainstem. Sometimes you do, but I still, I'll hit them up with steroids if I can get this to go away. I also use oxcarbazepine, which is like Carbamazepine, although you have to monitor sodium on that because sometimes that goes down. And then I've used other seizure medicines like Topamax. Lyrica is another medicine. So there's a bunch of different medications. What do you do for someone, though, that's not responding to the medications or unfortunately didn't go away with steroids? Do you consider surgical procedures?

C (8:20)

Yeah. So usually for patients who we've tried various of the medications that we've mentioned, and they may be on high doses and still having severe pain, I will have them see a neurosurgeon to be evaluated because there are different procedures that can be done. One of them in particular is called gamma knife radiosurgery, which is radiation to the area that helps to deaden the nerve and in many cases can be quite helpful in decreasing the pain significantly.

B (8:52)

Yeah, I've had some success also with the radiofrequency ablations, kind of burning the nerve. You might have some facial numbness, but it can provide dramatic relief.

C (9:01)

It can really make a huge difference. And although afterwards, some patients, if they're lucky, may be able to come off medication completely, many may still need to be on a low dose of one of these meds, like the oxcarbamazepine or gabapentine, for example. But at least they have good management of their pain. And the biggest thing is just to be able to function, be able to work, be able to eat, brush their teeth, wash their face, shave, et cetera, without having to be fearful that it's going to trigger some pain.

B (9:36)

Yeah, well, thanks for those insights. So let's turn to another painful phenomenon. So there's this condition called the Ms. Hug. This is not a kind, gentle hug, is a painful hug. And so can you explain what that is?

C (9:50)

Yeah, like you said, it really can be pretty painful. And I think it's also one of those symptoms that can also be misdiagnosed. What I sometimes tell patients, though, is not to assume that it's always due to Ms. And if you are having pain in the chest or tightness, do make sure that it isn't due to some underlying problem, heart issue, for example, because that's important. But it is this uncomfortable, painful feeling of tightness and pressure, usually in the stomach or chest area. Often the reason for it is due to Ms. Lesions in the thoracic spine. So you're not getting the proper signals to the thoracic area, and this causes you to have this uncomfortable sensation in the chest and abdomen.

B (10:44)

Yeah. So it's kind of like this Squeezing. As if someone's squeezing a boa constrictor around your torso, whether it be below the diaphragm or above the diaphragm.

C (10:52)

Yeah, and, you know, it can be constant for some patients. For others, it's intermittent. Some patients will say that if they're tired, if it's hot out, also can be a sign of an acute relapse that can trigger it.

B (11:06)

So, Marianne, what's your approach for patients with ms? Hug?

C (11:10)

Some patients work on some, you know, relaxation techniques, some stretching, flexing their body to try to help to relieve some of the muscle strain that might be present. But then medications that help to relax the muscles, like baclofen. Gabapentin also is another one which is often used. And patients don't necessarily have to take these medications every day. They can be taken as needed when they're experiencing the discomfort. One of the antidepressants, amitriptyline, is also a medication that can help alleviating the symptoms.

B (11:45)

Yeah, it's kind of interesting. I kind of see the same thing in my practice, that there's some patients seem to respond better to the muscle relaxants like baclofen or tizanidine, and while other patients seem to respond better to nerve pain medications like gabapentin or pregabalin, which is Lyrica. So I tend to find that some people respond to some better than others for unclear reasons. So what about There's a condition called Uhthoff's phenomenon. So what does that mean, getting to another uncommon Ms. Symptom?

C (12:14)

Yeah, hot temperatures can often worsen Ms. Symptoms. You know, a common example is if someone happens to get into a hot car in the summertime and they've had optic neuritis in the past, which can cause blurred vision, and someone might be doing quite well, and then they get into a hot car and will notice that they. My vision is suddenly blurred. And it's because the heat puts an added strain and added stress along those nerve fibers where there's demyelination and can cause some worsening of symptoms. You know, it can be the blurred vision, some increased numbness or tingling, if that was the problem that someone was experiencing. But the good news is that if you cool down the temperature, the symptoms go away.

B (13:03)

Yeah, we see that a lot, too, with people doing sports, whether they're a runner or play basketball or something, they'll end up getting numbness or blurred vision out of one eye because their body temperature gets overheated. And we also see it with infections, too. So you can get temporarily worse because you have a fever associated with an infection.

C (13:23)

Yeah. When we see this, we tell patients, put the air conditioning on in the car before you get into it in the summertime or, or wear some cool bandanas or a cooling vest if you're exercising, go into an air conditioned room, take a cool shower, have a cool drink, anything to cool down the body temperature.

B (13:44)

Marianne, that's really great advice. So I want to dive into another very painful Ms. Symptom, recurrent muscle spasms. So with flexor spasms, there's involuntary flexing and bending of the arms and legs. With extensor spasms, one's arms and legs straighten out briefly in a painful, rigid manner. So do you see this in your patients and what's your approach, Marianne, on this uncommon symptom?

C (14:11)

One of the first things that I try to do is to recommend that the patient get some physical therapy, some stretching exercises to try to help relieve some of the stiffness that often accompanies some of these spasms. Or, and then treating in many cases with muscle relaxants again like baclofen or tizanidine. And these usually help especially in combination with physical therapy because they often can be debilitating for the patient and prevent them from sitting properly, in some cases, certainly walking properly. So the combination of the physical therapy and the muscle relaxant can be quite helpful. The good news is that with the muscle relaxants, even though one of the side effects is that it makes you feel sleepy, taking something like that before bed works well because it does help you sleep a little bit better and helps to relieve some of the spasms in some situations, depending on the state that you're in. Cannabis has been used for these spasms also.

B (15:16)

Yeah, good points. If one of my patients is experiencing numerous episodes per day of painful spasms of the arms and legs, anticonvulsants like oxcarbazepine can help. Again, gabapentin may also be useful. So let's turn to clonus. It's a reflex with bouncing the foot. It's positional. So often if a patient takes their sole off the floor, the foot stops moving up and down. What causes clonus? Marianne?

C (15:43)

That's also related to demyelination that's present usually in the spinal cord. Normally you have this yin and yang with muscle excitability and inhibition, but with the loss of myelin, you lose that inhibition. So you have this hyperexcitability of the stretch reflexes and that causes the clonus.

B (16:07)

Yeah, so we tend to see it in people with stiffness in their legs or spasticity, sometimes very brisk reflexes when we tap on their knees. And then clonus kind of goes into that picture.

C (16:17)

Yeah, exactly, exactly.

B (16:20)

So another interesting topic is problems with slurred speech or swallowing problems. Do you see this in your patients?

C (16:28)

You know, fortunately, it isn't that common. Certainly not as common as Ms. Hug or lamit syndrome. But some patients do experience this, particularly if they have lesions in, in the brainstem where there is demyelination. And again, you're not getting the proper signals to the muscles that control swallowing. And so patients, they're able to speak, but it's slurred. And this is called dysarthria. The most concerning aspect of this is if it is associated with problems with swallowing, because then there's risk that the patient may have some choking episodes, particularly with liquids, thin liquids in particular. It's important that it's recognized that we ask about this as part of the neurologic exam, making sure to ask, are you having any difficulties with swallowing, with chewing, any choking episodes? Because it can be life threatening.

B (17:30)

Yeah. Fortunately, these swallowing episodes are rare. But if there are people out there living with Ms. Who have noticed some of these issues, what are steps they can take to keep themselves safe?

C (17:40)

Well, I think the first step is really to evaluate it more thoroughly to see exactly what's going on. Is the person at risk for aspirating liquids or solid foods and getting that into their lungs? I would send the patient for a swallowing evaluation, which is usually done by a speech therapist. And what's included with that is something called a modified barium swallow, which is where a patient is given different types of foods that have a bit of barium on it, which is a coating, and then they're looked at radiologically to see how are they swallowing. Is it getting stuck in the throat? Are they able to get it into the esophagus properly? Is there a problem with solids? Is it only with liquids? And then based on what's found with that evaluation, then different diets can be prescribed for the patient and also different techniques, you know, proper posture, holding the head properly, certain ways to tilt their head so they're less likely to choke, changing the consistency of the food that they may be eating, making sure that it's a little bit softer, small bites, making sure that it's moist, having something to drink in between what they're eating. So these are little tips that are taught to the patient by the speech therapist.

B (19:05)

Yeah. And then for slurred speech, who addresses that.

C (19:08)

So speech therapy also and again, too, evaluating with an mri, certainly if this is an acute episode, because a short course of steroids acutely might also help the situation.

B (19:19)

Right. And you want to rule out other things as well.

C (19:21)

Exactly.

B (19:22)

All right. Well, Marianne, thanks so much for sharing that incredible information. I think we covered a lot of ground. I think probably some people in our audience are noting some symptoms that they probably had in the past and did not seek treatment for. So hopefully this created a lot of awareness in the Ms. Community.

C (19:40)

My pleasure. And I'll end by saying, since we're getting into the summer months, everybody stay cool and keep those cooling vests on to prevent the UHS phenomena.

B (19:48)

You got it. Thanks again, Marianne.

C (19:51)

You're welcome. Bye bye.

B (20:02)

Next up is Dr. Bruce Hughes. He runs the Rouon Neurology Multiple Sclerosis center, part of Mercy One in Des Moines, Iowa. He's also an associate professor at the medical school at Des Moines University. He graduated medical school from the University University of Texas Health Science center at San Antonio and completed his neurology training at the University of Iowa. He has substantial clinical trial experience in the development of new treatments for multiple sclerosis. Welcome to the Ms. Living well podcast. Dr. Hughes.

A (20:34)

Thank you very much for having me.

B (20:36)

Excellent. Dr. Picone covered some uncommon Ms. Symptoms, but I'd love to highlight some others. So let's start with vertigo, an abnormal spinning sensation. Bruce, how do you know when vertigo may be Ms. Related?

A (20:51)

Yeah, so vertigo is definitely a challenge. Our MRI scans aren't particularly sophisticated at small lesions inside the brainstem, the area of the brain that controls vertigo. So even though you don't see a lesion there, there could be something there that's causing what's called central vertigo related to multiple sclerosis. Other ways we go by clinical realms that can kind of tell us if it's more position induced or there's high amounts of nausea or vomiting associated with the vertigo. It may be more peripheral vertigo, meaning vertigo that's caused by an inner ear disturbance. So it can be sometimes very challenging to separate out the two. There is testing that can be helpful, but it's not 100%.

B (21:43)

One common condition is benign positional vertigo, where people get dizziness, like when they roll over in bed or lie down in bed, stand up, and that usually lasts about 30 seconds or a minute at a time. And it's every time you change positions. How is Ms. Vertigo different than that?

A (22:00)

Ms. Vertigo typically doesn't have such a position induced component to it. It's more constant. And then also you really need to Ask questions about any other associated symptoms. Because the benign positional vertigo doesn't have real strong associated other symptoms like facial numbness or facial weakness or arm or leg weakness or other things that we might think that this is broader than just crystals in the inner ear.

B (22:36)

Yeah, I think it's really important to look for those other clues. Double vision with vertigo also indicates something going on in the brainstem. Balance issues are another big cause for concern. A lot of my Ms. Patients with vertigo have really a hard time walking. They have to hold on to walls and it can go on for a few days or even weeks.

A (22:55)

Yeah, I would completely agree with that.

B (22:58)

So, Bruce, if someone out there has vertigo and they think it could be Ms. Related, what's next?

A (23:04)

Well, I think a thorough examination is very important after you've taken a detailed history to see what else is associated with the symptoms. Because really, as we know as neurologists, history is key. Then with examination, looking at eye movements in particular can be helpful because we look for something called nystagmus, or when the eyes are kind of bouncing from side to side or top to bottom. The type of nystagmus can be sometimes indicative of a more central process. An Ms. Process versus a peripheral process.

B (23:42)

Okay, very interesting. So let's move on to hearing. So one of the uncommon symptoms of multiple sclerosis is hearing loss. So again, how would you suspect that the hearing loss is due to Ms. Versus some other condition?

A (23:58)

Unlike the optic nerve, the vision nerve, which is super commonly affected in multiple sclerosis, this nerve supplying hearing is not so commonly affected, but certainly the same nerve that transmits the information for balance runs right there in tandem with the hearing nerve. Hearing loss associated with aging or hearing issues, because you were listening to loud music or had loud machinery around you, that's more of a gradual, slow process. So if you have associated hearing loss, especially if it's one sided, what we call unilateral, that would steer you to be more concerned than if it's a gradual onset in both sides.

B (24:48)

We also look for those associated symptoms again. Right, because this comes out of the brainstem where the lesion or plaque would be. Yes. Interestingly, I had a patient with sudden onset of hearing loss in both ears as the first attack of Ms. Fortunately, the person responded to IV steroids and the hearing came back. So let's move on to vision. A typical Ms. Symptom is visual loss in one eye with pain, with eye movements called optic neuritis. Frequently, double vision may be the first sign of Ms. Due to an attack in the brainstem, other patients have this relatively less common phenomenon of shaky vision. So Bruce, how do you treat that?

A (25:27)

Yeah, so I think occupational therapy can be very important in assessing patients and teaching them ways to help compensate for this. So that's kind of a non medication approach. Sometimes intermittent use of an eye patch can be utilized to help combat the problem. And there are a variety of other techniques that occupational therapy may recommend that could be helpful. When it comes to pharmacologic interventions, it's tough. One of the go to medications is the pregabalin gabapentin category that the neuro ophthalmologists have described can be beneficial. There's some other centrally acting medications that I think are less so. And then depending on what the problem is, the ophthalmologist can play a role. Or optometrist putting in prisms that can bring the vision together. Now that's not necessarily for the motion part of it. That'd be more for the fixed element.

B (26:32)

Yeah. As far as pharmaceutical interventions go, I've had some success with gabapentin, which you mentioned. I've also had a number of patients responded well to a drug called Namenda or Memantine, which is an Alzheimer's medication. There's also an unusual type of nystagmus that's really responsive to baclofen. So it's important to try and figure out which of nystagmus it is because there may be a specific treatment out there and agree that a neuro ophthalmologist can really help with evaluation and treatment.

A (27:00)

Yeah, no question. And I think there's some off label reports with 4aminopyridine or dalphamperidine in specific eye movement conditions.

B (27:09)

All right, that's interesting. So let's move on. A lot of our patients have bladder and bowel issues, particularly bladder urgency, trouble emptying the bladder, and these are common for people living with Ms. But I think a lot of times the bowel symptoms get kind of overshadowed by the bladder and sometimes ignored where people don't ask questions. So what are the bowel symptoms that you see in your patients?

A (27:33)

I would say the majority of bowel cases are on the underactive side. In ms, it's usually an issue with constipation, but there is urgency. And that's always a bit of a challenge because I do think that irritable bowel syndrome is of higher incidence in patients with multiple sclerosis. You always have to keep in the back of your mind that if somebody's having severe bowel issues could they have another autoimmune condition, meaning inflammatory bowel condition? And then the third thing on the bowels one needs to keep in mind is that a few of our agents have been reported to cause colitis or inflammation of the colon. So you always need to think it's not necessarily the ms, it could be actually your drug that is treating it. My number one thing is to make sure that a patient's hydrating, drinking adequate amounts of water, because bladder and bowel issues commonly go hand in hand. But sometimes patients, they figure out that if I have bladder issues, well, if I don't drink that much, I don't have as much of a problem. But then that causes constipation. So it's kind of robbing Peter to pay Paul. And we look at making sure there's adequate amounts of nutrition, including salads and vegetables and basically higher fiber diets. And then we move on to stool softeners or prescription medications like Linzess, which can be very helpful in certain individuals and in cautioning patients not to get overzealous with using the over the counter agents because you can kind of decondition your bowel.

B (29:22)

Yeah, those are important insights. I've also found that some of my patients do well in probiotics, although it's less common. Bowel urgency and sometimes fecal incontinence with formed stool can certainly be an issue for patients as well because they don't have adequate control of the sphincter muscle when this happens. I've had success with the anticholinergic medications like Darafinicin.

A (29:44)

Completely agree.

B (29:46)

So let's move on to sexual dysfunction. Is this something that you see with your Ms. Patients?

A (29:51)

Definitely, and probably equally as underreported. But it's super important. Right. We're sexual beings as humans and it's important part of relationships. So in men, I always ask is the difficulty obtaining or maintaining erection or is it difficulty with ejaculation? Because quite frankly, sometimes our medications that we use are causing the problem with the difficulty with ejaculation. Right. We're treating one thing and we're causing a problem with another thing.

B (30:31)

Particularly those antidepressants.

A (30:33)

Yeah, exactly. So you always want to re look at the medication list.

B (30:38)

So if the issue is erectile dysfunction, what's your treatment approach? Bruce?

A (30:42)

ED medications can be helpful, there's no question about it. They don't work for everybody. The oldest agent, Viagra, is probably the most effective, but not the most convenient. And so it's kind of trial and error figuring out which one Works best for any individual. And then if you look at other options, I have a urologist that will prescribe an injection that is very effective. And then we have implants and devices that the urologist can utilize. And then I think other things would be just to make sure there isn't a psychological component to it, that a person's feeling like, I have ms, therefore I'm not sexually attractive to somebody else.

B (31:32)

Yeah. And it's also important, I think, for guys to check those testosterone levels, because we definitely see a higher rate of low testosterone in men with Ms. Actually can lead to increased disability. So what about women with Ms. That are having sexual dysfunction? What are the typical symptoms that you hear from them?

A (31:52)

Dyspareunia, which is the medical term for pain. That intercourse is now painful and oftentimes the signal down for natural lubrication to the vagina can be impaired. And so dryness may be an issue. And so we talk about making sure that there is adequate lubrication. When we look at arousal, there's arousal issues where the stimulation needs to be more intense than did previously because the signal isn't as great. And we have references of a variety of devices for increasing the input from the vaginal region back to the brain and making sure that we're doing everything possible to make something as enjoyable as possible. And then I'm thinking probably the other element ties in again with just to make sure that one is psychologically wanting to be involved with intimacy.

B (32:57)

One last category I want to dive into. We know that anxiety and depression are very common. About half people with Ms. Experience depression at some time, and anxiety is over 40%. But there are some more unusual phenomenon. One of them is called pseudobulbar affect. So what is this uncommon symptom?

A (33:17)

Yeah, pseudobulbar affect is really curious. Bulbar or bulb or brain stem. Is the word pseudo meaning false? And then affect is how you're behaving. And we have evidence of bulbar affect when somebody has an emotion disconnected with what one's seeing. So somebody is at a funeral and they are busting out laughing or the opposite. There's something happy and joyous, and they're incredibly not happy appearing, and they feel fine. They just can't control the emotion. And there are various agents that have been used, including older agents that have been used now in combination.

B (34:06)

So I want to thank you, Bruce, for really illuminating these unusual symptoms of Ms. I think the. The more that people living with Ms. Are aware of these various symptoms, the more likely they're going to speak up. And get appropriate treatment.

A (34:21)

Yeah, I completely agree. Education helps alleviate fears and worries. We should have concern about our conditions, but we shouldn't have fears and worries. So I appreciate you having me on and just keep educating. This is terrific.

B (34:35)

Thanks to our listeners for downloading this episode of the Ms. Living well podcast on uncommon Ms. Symptoms. Multiple sclerosis can be complex with an array of symptoms that vary between each individual living with the disease. If you are experiencing new or unusual symptoms, it's important to let your healthcare team know right away. Our goal is always to provide treatment and relief as soon as possible. Thanks again to TG Therapeutics for sponsoring this episode. Keep in mind the topics we discuss in the short show are strictly informational and not medical advice. Any change in your treatment should be discussed with your healthcare providers first. Our show is hosted by me, Dr. Barry Singer, produced by Carrie Harmon with audio editing by Frank Garza. Our theme music is the Gold Lining by Broke for Free. If you like the show, please share it with others living with Ms. I'd really appreciate a positive review on Apple Podcasts. It helps more people people find out about the show. You can follow me on X at drbarry Singer. More information about our guests and the websites can be found in the show notes for this episode in the blog section on mslivingwell.org thanks so much for listening. This has been an Ms. Living well podcast.