March 26, 2008 Teleconference with Ben Thrower, M.D. and Tracy Walker, R.N.
Operator: Good evening, my name is (Cara) and I will be your conference operator today.
At this time, I would like to welcome everyone to the Successful Strategies for Symptom Management Conference Call.
All lines have been placed on mute to prevent any background noise. After the speakers remarks, there will be a question and answer session. If you would like to ask a question during this time, simply press star then the number 1 on your telephone keypad. If you would like to withdraw your question, press the pound key. Thank you.
I would now like to turn the call over to Christine Ratliff, the Editor of MS Focus, the National Publication of the Multiple Sclerosis Foundation. Please go ahead ma’am.
Christine Ratliff: Thank you (Cara), good everyone and welcome to our National MS Education and Awareness Month Teleconference Series.
Tonight we will be discussing Successful Strategies for Symptom Management with (Ben Thrower) M.D., and (Tracey Walker) RN.
(Ben Thrower) is a Board Certified Neurologist specializing in MS, Dr. (Ben) is Director of the MS Institute at Shepherd Center in Atlanta.
He is Medical Advisor to the MSF and Associate Clinical Instructor of Neurology at Emery University.
Dr. (Ben) specializes in early and aggressive treatment of MS, Patient Education, Physical Rehabilitation and MS Research.
Perhaps best of all Dr. (Ben) has a sense of humor, the ability to explain complex issues in a simple way, and the patience of a saint!
(Tracey Walker) is a Certified Family Nurse Practitioner a Wound Ostomy Continence Nurse, and a Georgia Registered Nurse.
(Tracey) has been with Shepherd since 1994, she deals with urgent care visits and alternates patient follow up visits with Dr. (Thrower).
(Tracey) created Shepherd Centers MS School, a program for people who are newly diagnosed with MS and need additional support as they learn to cope.
(Tracey) has always wanted to help people, but knew nursing would be her passion, after observing nurse missionaries in Haiti during her study abroad. She is the proud mother of 11 month old Macon.
We are going to just ask a couple of questions of the speakers and then we’re going to open up the lines for your questions. Dr. (Ben), do you think that you could explain a little bit about the symptom of fatigue and how that might be managed?
Ben Thrower: Sure thing, and thanks Chris for hosting this along with the MS Foundation tonight. We appreciate it, and thanks to everyone who is joining in with us.
You know, far and away, I think fatigue is the most common symptom that we see in MS. And you know on the other hand it can be one of the – the most nebulous things to get our hands around because if you go into a family practitioners office and you say how many people in the waiting room have fatigue, well everyone is going to raise their hand. Everyone has busy lives.
But the fatigue that’s specific to MS is a different level, different magnitude. You know the definition of MS fatigue is it limits function, you can’t do what you want to do when you have that sort of fatigue.
There are lots of different factors to think about with fatigue. We want to make sure that the person is sleeping well and go after that first.
There a lot of things that can interrupt sleep at night for a person with MS. If the sleep is good, then maybe we’ll address it just as a fatigue issue in the daytime.
There are two different types of fatigue that we see in MS, one called lassitude which is just like someone’s unplugged you – it doesn’t have to be related to what you’re doing or to heat exposure – someone has just drained the battery, it can come on very suddenly, it’s just out of the blue.
The other type of fatigue is called nerve fiber fatigue, and that one we understand probably a little bit better, that one is due to the stripping of the myelin on nerve fibers in the brain and spinal cord.
And as you use those naked nerve fibers again and again like with exercise, or if you raise your core body temperature you can actually drain the battery if will, it’s called conduction block, you’re making those nerve fibers not work.
As soon as the person rest cools off, maybe gets a good night’s sleep, they are good to go again but then they will typically go to that same cycle once again.
We have a number of different ways of addressing all the types of fatigue. You know if we can do it without medications we certainly try, exercise has always been one of the greatest treatments for the lassitude it seems like a Catch 22 to tell someone to exercise when they already tired, but that’s been consistently shown to be of benefit for fatigue.
And as we go through the evening of people’s questions, you know specifically on what we can do for those other types of fatigue, we can touch base on those also.
Christine Ratliff: Okay thank you very much, (Tracey) would you discuss for a moment what you believe is the most underreported or under treated MS symptom?
Tracey Walker: I think, Chris, there are several, but being a wound Ostomy Continence Nurse, bowel and bladder dysfunction are kind of close to my heart, if you will. I think they are very important symptoms that can occur and really impact people’s quality of life.
Bladder dysfunction with MS, usually the most common form it takes, is a urinary urgency / frequency kind of problem. You’ve seen the commercials of got to go, got to go, and that’s kind of how it tends to present with MS.
And another real descriptive term is bladder irritability, and I think that’s a very good term because it really describes what’s going on, the bladder is really irritable and sends messages very frequently that it needs to empty even though it may not have much fluid in the bladder at the time.
There are a lot of things that can be done for bladder irritability. Obviously we have a lot of medications that we can treat the problem. But there are a lot of things people can do before they have to resort to medications.
One thing that is real helpful is avoiding bladder irritants, caffeine, alcohol, NutraSweet, carbonated beverages those kind of things can really increase the irritability of the bladder.
One of the most common bladder irritants however is concentrated urine. You know, the first thing people do when they have that problem is they stop drinking fluids because they think that will make the problem better and what it actually does is make it worse.
So we always encourage people to maintain an adequate fluid intake. Of course, water is the best thing but other fluids are fine as well.
Sometimes, pelvic floor muscle exercises can help decrease bladder irritability and that’s something that most woman learn if they have children – they are taught Kegel Exercises.
And then, if need be, we can always resort to medications like Ditropan and Detrol to help relax the bladder.
There can also be urinary retention with MS and although it’s less common, I would say it’s much more dangerous. And people often times don’t realize that they are not emptying their bladder sufficiently until they start having urinary tract infections over and over again, and then we discover that the bladder is not emptying completely.
Bowel dysfunction is also a very common issue. And usually that takes the form of constipation. And there are obviously a lot of things we can do for constipation and we usually start with trying to get people to increase their fluid intake and maybe do some fiber supplementation and many times that takes care of the problem.
Sometimes we have to add a stool softener and then from there if we don’t have good results, every two or three days, we usually use some form of a mild laxative.
But you want to start with the mildest medication possible because your bowel does become dependent on whatever you’re using. But there are a lot of things that we can do to help those two symptoms and really improve people’s quality of life.
Christine Ratliff: (Tracey) do you find that people are hesitant to talk about those problems with you?
Tracey Walker: Yes, I think so. First of all, they may not realize that this is a part of their MS. But other times they are embarrassed to talk about it with their provider. And we try to really ask people if they are having that problem to sort of free them up to really talk candidly with us about it. Because we can’t do anything or help if we don’t know what’s going on.
So absolutely they should – folks should talk with their provider about the issues.
Christine Ratliff: Okay, (Cara) do we have any questions on the line yet?
Operator: Yes ma’am we do have a question from (Debbie) in New Hampshire.
Debbie: Yes this is (Debbie) I do have two questions, actually. Tracey, you addressed bladder problems. Bladder hesitancy, meaning you can’t fully empty your bladder.
Tracey Walker: Mmm-hmm.
Debbie: The problem was addressed to my neurologist and all he told me is that I would have to see a urologist before he would do anything. Is that a common answer a neurologist would give?
Tracey Walker: It may be because if you’re having difficulty emptying your bladder, it can be a complicated issue. And sometimes specialized testing can be real helpful. A urologist can do some video dynamic testing or whatever, they can actually tell how well your bladder muscle is functioning and how serious the retention is.
If it’s a serious issue then you may need to learn how to do intermittent catheterizations.
If it’s a mild problem there maybe medications that can help the issue, but a lot of times neurologists are hesitant to treat the retention issue without that specialized testing.
Debbie: Yes, it’s not really a retention issue. It’s like a hesitancy, like I go, but I can’t fully empty my bladder and I know that.
Tracey Walker: Mmm-hmm.
Debbie: So I have to sit there and I have to wait and sometimes it happens and sometimes it doesn’t.
Tracey Walker: Mmm-hmm.
Debbie: I don’t know if that’s still considered retention – he referred to it as hesitancy.
Tracey Walker: Mmm-hmm.
Debbie: Would that be treated the same way?
Tracey Walker: It depends on what degree of retention is actually there. Inn our clinic we have a little bladder ultrasound machine. We can have people go to the restroom, empty their bladder. And then we have them come back to the exam room and we can do a bladder ultrasound and it tells us how much urine is still in their bladder when they feel like they’ve emptied completely.
If there is only you know, if there if less than 100 ccs, we tend to watch that and monitor it and teach people how to do something called double voiding.
And what that entails is just using position and your arms to kind of help facilitate bladder emptying. But if it’s greater than 100 ccs, we tend to refer to urology because their expertise in terms of medication management and things can really add a lot to managing the issue.
Debbie: I recently moved to the area. If I found a doctor that was related to a MS clinic would they possibly have the same type of machines that you do?
Tracey Walker: Very possibly, yes.
Debbie: So that would – that would be something I would look into.
Tracey Walker: Mmm-hmm.
Debbie: My second question is, my MS mostly affects me emotionally and with speech hesitancy and what we talked about last week, cognitive impact, feeling like I’m losing my mind and it’s invisible – okay.
So far I have three plaques in my brain. But I’m finding that I’m having a lot of problems with my legs. Like arthritic pain, can those be symptoms of new plaques? Or, is that just a side effect or what would you recommend, getting another MRI or…
Tracey Walker: Could you address that one (Ben)?
Ben Thrower: Sure, you know I think one of the biggest disservices that the neurological community has done – or the MS community is using terms like relapsing or remitting.
We need to be able to categorize what sort of MS someone has, but when we say relapsing or remitting, remission to a lot of people means I don’t have any symptoms. I’m doing perfectly well.
Debbie: Okay.
Ben Thrower: And unfortunately, with most MS folks that’s not true very often. So even where there is no active inflammation in the brain and spinal cord you’re not having an active attack, most people retain some symptoms and the pain like you describe in the legs we hear a lot of folks complaining of a deep aching sort of pain.
Debbie: Right.
Ben Thrower: And that we certainly do see that. The question about when should we follow up with MRIs. You know, if you go to a group of MS doctors you can almost start fist fights with that one! There is no agreement out there, at Shepherd we tend to be fairly proactive, we do yearly brain MRIs, every other year cervical spine in people who are doing well.
If you’re having new stuff going on that certainly changes things and we might push that schedule up.
But, you know the MRI is a great tool. It can give us a window into what’s going on. But you have to look at it in the context of, you know, is the person having a relapse, are they having progression of symptoms, it has to be part of that whole big picture of what’s going on with you.
Debbie: Even though my plaques are in my brain, can the pains in my legs still happen even though I don’t have any lesions like on my spine?
Ben Thrower: Certainly I mean sensation starts with the brain. And if we look hard enough in a person with MS, 70% of the time we can find something in the spinal cord. And sometimes we think something is there even though we don’t see it. You know the MRI is a great tool but it’s not perfect.
So you can have low levels of demyelination in the spinal cord that maybe we just don’t really fully appreciate. So, if it’s both legs, more likely than not, there is a little something going on in the spinal cord somewhere.
But in theory it could come from the brain also.
Debbie: Okay, because I’m on so much medication as it is right now for anxiety, depression, I’m on Provigil for energy, I’m on (Saclastin) and (Ultram) for the pain on the legs. I’m on valium so the…
Christine Ratliff: (Debra) I just want to interject for a moment and let you know that if you would like to ask further questions…
Debbie: Okay.
Christine Ratliff: you can do that at another point. But we’re going to take a couple of other questions from callers.
Debbie: Okay fine, thank you.
Ben Thrower: Thanks Debbie.
Christine Ratliff: Thank you for calling.
(Cara) do we have someone else on the line?
Operator: Yes ma’am your next question comes from (Nancy) in Nebraska.
Christine Ratliff: Hi (Nancy).
Nancy: Hi good evening and thank you for the program, you’re always really informative and I enjoy them.
I have one question about cognitive impairment. Are there any like exercises or puzzles or games or anything that a person can do to help stimulate the mind as far as memory or cognitive issues?
Ben Thrower: Let me throw in my two cents worth, and then (Tracey) give your thoughts too. We – were blessed in our center with speech pathologist with a very big interest in cognitive issues.
And we frequently send people with you know, word finding problems, memory issues, trouble just doing things in their daily routine.
We’ll send them to her, she’ll do a little light cognitive testing to find out what the trouble spots are, and then look at ways of trying to structure the person’s day so that they function in the high areas.
But there is this concept of cognitive rehabilitation that you can use the brain and maybe build up some of the – those areas and function better.
I think the things that you mentioned, you know, challenging yourself with crossword puzzles, reading. I think just using it – just like with physical therapy – and we know with the muscles if you don’t use it you’ll lose it. And I suspect that’s probably true with cognition also.
If any of you are more technically inclined, we have three kids and one of them is a teenager so we’re all about the computer games and all that.
The Nintendo DS System, which has become pretty inexpensive, has a great game on there, it’s a brain challenge.
And it’s basically a program where you challenge your brain everyday through little mental exercises and it gives you a score and it tells you where you’re at. It’s a wonderful program that is relatively inexpensive. And it hits a lot of different areas from reading to sorting and again I think it’s a good way of sort of giving your brain some exercise everyday – (Tracey).
Tracey Walker: Yes I would agree. There is definitely a component of use it or lose it with your cognitive function. And if you have a neurologist that can refer you to a speech therapist that can really help ensure that you are targeting the areas that are most problematic for you.
Nancy: One additional question, I listen to a program on our public TV station here in Nebraska. They were talking about the plasticity of the brain, that it is able to form grow new cells and things like that.
If MS is present with plaques, is that able still able to happen?
Ben Thrower: Absolutely.
Nancy: There was an interesting study a while back they looked at people with MS who had had a relapse and they treated both groups of people with steroids. One group just got the steroids, the other group got steroids and physical therapy.
And they did something called functional MRI, where you don’t look at the brain structurally, but rather you look at what part of the brain is being used. And they could see that it looked like more areas of the brain were being used and maybe some rerouting – or using other pathways of the brain – was occurring in the group that was undergoing physical therapy after their relapse.
Just a couple of years ago at Emery University, a study showed that neurons – the brains cells – actually start to decrease in number after about age 30 and there is nothing that you can do about that.
But there was another study that challenged those findings. It showed that that isn’t absolutely true. There may be, like you said, more plasticity that some of these cells may be able to regenerate to a certain degree.
Nancy: Okay, well thank you very much and you all stay safe and well.
Ben Thrower: Thank you.
Tracey Walker: Thank you.
Christine Ratliff: (Nancy) did you hear the teleconference last week?
Nancy: I’m not….
Christine Ratliff: Cognitive and emotional challenges.
Nancy: Mmm-hmm, yes that I did.
Christine Ratliff: Okay, the transcript for that is going to be posted on our website soon.
Nancy: Okay.
Christine Ratliff: So check back and if you want to, you can print that out then you can have that information as well.
Nancy: Okay I just received the book from (Jeffrey Gringold).
Christine Ratliff: Oh great.
Nancy: It’s very interesting.
Christine Ratliff: Oh good, good.
Nancy: Thank you.
Christine Ratliff: Okay thanks for the call
Nancy: Thank you, bye-bye.
Operator: Your next question comes from (Nancy) in Washington.
Christine Ratliff: Hi (Nancy):
Nancy: Hi, I have MS with foot drop which is not uncommon, and in this publication there is advertisement about some device that you wear under your knee and in your shoe and it stimulates the nerves so that you – you can walk normally.
And I wonder if this – do you have any information about how successful this is and because I’m over 65 how does something like that if it is useful get approved for Medicare?
Ben Thrower: Great question.
Woman: Yes.
Ben Thrower: (Tracey) and I both are very familiar with the devices, there are actually two of them. The one that saw is called Bioness it’s B-I-O-N-E-S-S…
Nancy: Yes.
Ben Thrower: …L300. The part that goes on your knee is the stimulator so it gives a stimulus to the nerve that’s going to bring your foot up.
The part that goes on your shoe is actually a radio telemetry device that’s really where the high tech part is. That’s telling the stimulator where your leg is at and where your foot is at where your foot is at to know when to fire.
We’ve been very impressed with what those do. The other device, the walk aid, is a similar idea. It just has a knee unit and a different way of coordinating that. Neither one is cheap; the Walk Aid is the “cheaper” of the two at $5,000 and Bio machine is six. Medicare for right now is pretending that these things don’t exist.
And it’s being addressed; both companies are getting in front of them, putting healthcare providers in front of Medicare and trying to explain to them these could make a huge difference for quality of life for someone.
Nancy: Right.
Ben Thrower: Traditionally if we send someone to a therapist with foot drop they will prescribe an ankle foot orthotic, some people do fine with those, a lot of ankle foot orthotics just sit in the closet though.
And so I think these devices are wonderful. We’ve just got to find a way to get them paid for.
Nancy: Right. Thank you.
Operator: Your next question comes from (Susan) in Oklahoma.
Woman: Hi (Susan).
Susan: Yes, I have a question about lower back pain and then it works on up to your thorisic cavity. I guess they call it the MS Hug. What are your suggestions for that?
Ben Thrower: (Tracey) you want to take that one?
Tracey Walker: Sure, you know MS Hugs can be very challenging to treat. A lot of times we will try to treat it like a muscle spasm kind of issue and sometimes Baclofen or Zanaflex, the muscle spasticity medications, can be helpful for that.
A lot depends on how frequently you experience the symptom, how severe it is. You know because a lot of the medications we use for spasticity or for nerve pain can have some side effects that you know people unless they – unless the symptom really impacts their day to day life people tend to not want to have to try the new medications.
Susan: Also I have heard about taking Vitamin D with D3 is good for MS.
Ben Thrower: So there are two studies out that show that it seems like low Vitamin D levels early in life can be associated with higher MS risk later. And we started looking at Vitamin D levels in the folks that we work with. And a lot of people do come back very low.
What we don’t’ know at this point is does supplementing with Vitamin D now that the person already has MS do anything for their MS.
And it could be a good thing; we just don’t have the final answer yet. We’re – we are supplementing with Vitamin D if the levels come back low, if nothing more it should be good for bone density.
And if taking a RDA – a recommended daily allowance of Vitamin D you’re – you don’t really do any sort of blood testing. You don’t want a mega dose on Vitamin D without some guidance as it is one of the few vitamins that can be toxic.
So before you take big doses of it you might want to work with your local doctor to check the blood levels and see where you’re at so that you can actually do it with some guidance.
Woman: We know that especially for woman over the age of 40, they should be taking calcium supplements. And a lot of the calcium supplements available now have Vitamin D in addition because it helps the body absorb the calcium.
So a lot of times you can hit both with one supplement.
Susan: Okay, thank you very much, good luck with the call.
Operator: Your next question comes from (Linda) in Wisconsin.
Christine Ratliff: Hi (Linda).
Linda: Good evening.
Christine Ratliff: How are you?
Linda: I’m fighting a cold but I’m pretty good.
Christine Ratliff: Good.
Linda: I am a caregiver for my sister who has MS and she’s also hard of hearing. I was wondering because this is – you know the symptom management conference here.
Have you heard of LDN the Low Dose Naltrexone therapy at all?
Tracey Walker: (Ben) you want to take that?
Ben Thrower: Sure, so low dose Naltrexone is getting a lot of attention especially on the internet right now. And we don’t have the final answer it is undergoing studies in several different MS centers.
Naltrexone at it’s usual dose is an FDA approved drug to help people come off of different addictions, morphine, heroin, prescription painkillers, it’s an opioid receptor blocker so it helps people get off of those medicines.
With the LDN, the reason they call it low dose it’s about a tenth of what the typical FDA approved pill is. The FDA approved dose is 50 milligrams, the low dose Naltrexone can be 3 or up to 4.5 milligrams taken once daily by mouth.
I – you know there is some theoretical reason why it could be a good thing. I think for – if you have a newly diagnosed person with relapsing remitting MS we would probably prefer they go on one of the better known medicines where we have some track records.
If the person really has limited options, you know maybe secondary, primary progressive MS where there aren’t a lot of FDA approved drugs.
We’re fairly open to trying the Naltrexone now it’s – you know, my experience – it’s had a low side effect risk and it’s relatively inexpensive.
You do hear some people say that they have felt better if it’s doing what some of the research might suggest it should do.
We would hope that it would actually slow or stop disability you know– so realistically a success for that drug could be just like any of our other immune therapies – maybe it’s just stopping progression.
So I think we’re keeping an open mind on it, it’ll be interesting to see what some of the official trials that come back.
Just be careful on the internet. There is good information and there is also a lot of hype around this drug, too. And I think there are some claims being made about this drug that almost make it sound like a cure that I just –you know, be a smart consumer. I think it’s something reasonable to look at, but don’t get suckered too much into the hype either.
Linda: I was wondering about it.
And she is on Rebif right now 44 milligrams, and she’s been on that since 2002. And I was just looking that you know maybe if this is – because at the time this first – that I first found out about it it was not approved in the United States and now they are doing other studies in the United States for this.
And I was wondering if that would be an option for her or if that was not an option at all and she just say on the Rebif.
Ben Thrower: I would definitely stay on the Rebif, and I guess the questions could you add the Naltrexone and we don’t have any information on putting the two together.
And this is just my personal opinion. I don’t have any big reservations about putting those two together.
It is still not FDA approved so what you would have to do is get a prescription and go through a compounding pharmacist to make it up for you.
Insurances typically do not cover it, usually with a compounding pharmacist, it shouldn’t be terribly expensive – 30 maybe up to $60 a month in that range.
Linda: Good, I had the question about the lesion in the brain you know she does have an MRI now every year. And you were talking about whether the lesions you know increase or they stay the same.
Let’s assume that the lesion has increased and she is still on the Rebif, would there be a different treatment involved instead of the Rebif? As a neurologist would you change her treatment if she – lets say has more lesions on the brain but she doesn’t have any new symptoms or side effects?
Ben Thrower: Great question, ideally with the treatment you’d like to see no relapse no progression of disability and no new lesions. We don’t get that in everybody, and then the question becomes well how much of one of those things going on are you going to put up with and again there is no agreement out there.
If you have no lesions forming on the MRI and no symptoms to go along with it, I think most of us in the MS field feel like in our gut that’s probably still not a good thing that down the line you kind of suspect there is going to be some price that’s paid for that even though you’re not seeing it right now.
And her options would really depend on what she’s been on, you know if she is not on Rebif, she’s not been on Copaxone, that would certainly be an option.
If she’s been on both Interferon and Copaxone is still progressing, then you start looking at you know could you add something to the Rebif and there are lots of different options from immune suppressants like Methotrexate.
Or the patient may be a reasonable candidate for some of the second line drugs, like Tysabri or Novantrone.
So usually it’s a matter of just sitting down and looking at where the person has been, what are the health issues that they have that might take one of these options off the table and just you know, partnering with your neurologist and coming up with a plan.
If you took that situation to several different MS centers you would probably find some people that would say well, I don’t think you crossed that bridge that we need to do something differently yet, while others would say no, we’re not happy, let’s move on.
Linda: Of the urinary urgency she does have that, I mean when she says I have to go, I have to get her to a bathroom quickly.
I believe it was (Tracey) that was saying something about there is medications that she would be able to take to help that or not?
Tracey Walker: Sure, yes…
Linda: I kind of, I don’t know if I missed that part.
Tracey Walker: No you’re right there are definitely medications that help relax the bladder and make it not as irritable. So many times it will help you know, give that extra few minutes so people can comfortably make it to the bathroom without leaking or, maybe not have that sensation as often.
So there are several medications now that patients can opt for, there are oral medications there is also a patch that you change you know, twice weekly.
So there are definitely options now, you want to make sure she’s not retaining urine because those medications can – because they relax the bladder they can keep it from being able to empty completely.
So, you know there is some assessment that needs to be made by the medical professional in terms of whether or not she is good candidate for that.
Linda: And what….
Christine Ratliff: And I just want to mention here that if you call the Foundation, our number is 1-888-673-6287,
Linda: Okay.
Christine Ratliff: You can request literature on just about every topic that you’ve brought up. On the LDN and the bladder issues, and also if you would like to ask more questions we have a forum on our website www.msfocus.org. We have an ask the doctor forum where you can post the question and Dr. (Ben) is one of the responding doctors.
So you can feel free to do that and if you need help getting on to the forum – anyone that’s listening – you can just call and ask us to help you and we’ll walk you through that.
Linda: And then next point about the Nintendo exercise deal, what was the name of that, is there a name?
Ben Thrower: The Nintendo DS is the little unit, and I’m blanking on it – I need to use the unit more. I can’t remember - it’s...
Linda: Ask the kids they’ll know.
Ben Thrower: It’s a brain something, if you go to the – to Target, Wal-Mart, any of these places and ask the teenager standing by in the counter they’ll know exactly what you’re talking about.
Linda: Okay, okay thank you very much for having this, and for helping us out here.
Woman: You’re welcome – thank you for the call.
Operator: Our next question comes from (John) in Washington.
Christine Ratliff: Hi (John).
Woman: Hello.
Christine Ratliff: How are you?
Woman: (John’s) wife, couple of questions and I’m sorry I have laryngitis. But a – a couple of comments also – I’m – I have a AFO for a foot drop, and we’ve named it Oscar, and it’s definitely not in the closet so he’s given me a whole lot of confidence when I walk.
Ben Thrower: That’s good.
Woman: That’s something you might want to tell your patients. I have a question about bowel problems.
Woman: Mmm-hmm.
Woman: Because I take Oxybuten for bladder, and (unintelligible) also makes me even more constipated.
Tracey Walker: Mmm-hmm.
Woman: I have a pretty good regime of fruit and grains and all sorts of stuff so, I have my periods of being fairly regular.
But when I’m not I just sort of – and this is going to be sort of gross, but I’ll just reach in and dig it out, and I was just wondering if there a easier way to do that?
Tracey Walker: Mmm-hmm yes, sometimes you know, it is frustrating because many times the medications we give for one problem like bladder urgency frequency can contribute to another problem like constipation.
You know the bladder medications can be very drying. So you know in terms of the fiber supplementation that we talked about, I think good dietary intake of fiber is very helpful.
Most people need an actual supplement of fiber to be you know, really consistent with it. And be sure that they are taking in plenty of fluids.
But to answer your question about what we call that, here at Shepherd we’re also a spinal cord injury hospital, and many of our spinal cord patients have to perform that procedure on a daily basis.
Woman: Mmm-hmm.
Tracey Walker: And we call that a bowel program or a manual disimpaction, and as long as it’s performed gently it doesn’t have any potential for harming a person.
There are other ways you can try, there are suppositories that can stimulate bowel emptying, so you could try some of those.
Again we don’t really recommend people do those on a daily basis unless they absolutely have to. But sometimes you know I would kind of maximize your fiber and fluid and the stool softener part. And then you can also do some what we call behavioral things to help facilitate the bowel emptying.
Woman: Okay, good.
Tracey Walker: And you know that you can try to time bowel emptying after meals, raise your knees higher than your hips. Drink warm fluids, those things can help facilitate emptying as well.
Woman: Because there is also an opposite to it.
Tracey Walker: Mmm-hmm.
Woman: And its almost like the bladder.
Tracey Walker: Mmm-hmm.
Woman: Is that when it’s time to go.
Tracey Walker: Mmm-hmm right.
Woman: I got to go.
Tracey Walker: Right, right.
Woman: And more than the bladder which you can sort of prevent with diapers and stuff.
Tracey Walker: Right, right the bowels can be a big issue. And so that brings me back to – I hate to harp on the fiber and fluid. But a lot of times you know managing bowels and you know preventing constipation and then preventing watery leakage are – you know, you do that the same way and that’s by managing your bowel consistency.
And what you want to do is you want to maintain a soft formed stool so that your bowels can transport that easily but, your sphincter and your musculature can hold it in easily as well and the key to that again is that the fiber and fluids.
So a lot of times our diet changes so much that you know that’s where a supplement can really come in and help maintain the right consistency.
Woman: Okay, and can I ask one more – do I have time to ask one more question.
Christine Ratliff: Yes go ahead.
Woman: Okay it has to do with sexual desire.
Tracey Walker: Mmm-hmm.
Woman: It’s one of the things that has sort of disappeared
Tracey Walker: Mmm-hmm.
Woman: And I don’t know the fact that I’m post menopausal and I take anti- depressants. But, whatever if that’s related, but do you have any hints for helping stimulate the desire?
Tracey Walker: Yes I – you know, with woman sexual desire is a very complicated thing. Because you know, were wired very differently than men, and our sexual desire in particular is impacted by you know our mood, our energy levels, our hormone levels and our relationship issues.
You know a lot of times our sexual desire is not you know increased by vision or touch or feel, it’s many times connected to an emotional aspect of the relationship.
But, with MS you know our sexual function can definitely be affected and then when you add on top of that the fatigue issues and the medication issues that make it – you know, makes it even more complicated.
I would start with looking at the medications that you’re taking, and sometimes with antidepressants if you’re on a particular one that may cause a lot of sexual dysfunctions, sometimes reducing the dosage or adding a different type of antidepressant can help improve that.
The other thing I would do is I would if you haven’t seen your OB GYN recently and talked to them about that issue. I would definitely go there as well, because many times you know hormonal issues can impact it and there are things that can be done for that.
But I think the biggest thing is you know, keeping the lines of communication open with your spouse. And being sure that you are talking about that and kind of you know keeping the relationship issues on the surface in terms of not letting you know, that impact your relationship.
Woman: All right – excuse me – that’s great.
Christine Ratliff: Thank you for the call.
Woman: Thank you.
Operator: Your next question comes from (Barb) in Michigan.
Christine Ratliff: Hey (Barb).
Barb: Hi, my question is well I have many of the invisible symptoms, I have the fatigue, constipation, pain – a lot of pain, numbness, double vision, depression.
I’ve been dealing with trying to get on disability but everybody looks at you and says well you look so good. And, I’m fighting the battle and I can’t get it through most of the people’s head you know that just because they are invisible that you know, it’s bothering me and I can’t – I can work because of it and I can’t get on disability.
So is there any help?
Ben Thrower: And you know that’s a common thing that comes up, some of the symptoms that do affect someone’s quality of life or their ability to work are not something that we can very easily.
I think what’s helpful is to try to get those things documented objectively so that someone who doesn’t know a lot about MS could look at something and say okay now I get it.
For instance with cognition if you’ve not had neuron psychological testing done so they can actually put you through the paces and can put a number on it so yes this is where she is having trouble.
A good neuropsychologist will take out those numbers that they generate and will put that into some kind of real world meaning, they’ll say I think this person can’t do this work if they made the following modifications.
Or no, this person can’t do anything, so that would be very helpful and your neurologist should have you know someone that they work with a neuro psychologist that they could refer you to get that done.
For the fatigue part there are some scales out there, I know for us (Tracey) sees folks and goes – there is a little form that we can fill out that actually comes from Social Security we have people you know do some walking and you know measure their strength before and after just to try to put some sort of objectivity to that.
But its – yes it – I think describing it yourself when you’re applying for disability letting people know how it impacts you but then also trying to document it somehow in a way that the person can really understand it would be helpful.
It is a struggle and we see people that have all their ducks in a row, and all the paperwork looks good and you think they would fly through with you know, no trouble whatsoever. Then they get held up and then someone else goes through without any difficulties. So just hang in there and know that you aren’t alone.
Barb: Okay. Thank you.
Christine Ratliff: And again (Barb) I encourage you to call the Foundation because we have additional literature on that.
Barb: Oh okay.
Christine Ratliff: We have several actually newly published books that can kind of help walk you through the process.
Barb: Okay.
Christine Ratliff: And a lot of good information, so do give us a call.
Barb: All right thank you.
Christine Ratliff: Okay? Thank you.
Operator: Your next question comes from (Dawn) in New Hampshire.
Christine Ratliff: Hi (Dawn).
Dawn: Hi, thank you so much MS Foundation and Dr. (Ben) and Nurse (Tracey).
I was diagnosed two years ago. My first symptoms were 29 years ago. So I really went through the wringer.
A lot of extensive scarring in the brain.. A question I have please to both of you, this is one that I don’t hear much about, so I’m going to ask this one in particular.
I have extensive pain in my ears, without infection. And I was wondering with pain in the past I’ve dealt with years on and off with burning in the legs, those type of things.
But this is something newer and this can also be contained with MS just travel wherever?
Ben Thrower: Sure I mean, any part of your body is in theory fair game for pain. Specifically to the head and neck, you know there are these things that call neuralgia’s tri general neuralgia would be the classic one.
And so that’d be pain usually along the lower part of the jaw or across the cheek sometimes the forehead. You know pretty intense sort of pain can come in waves of you know stabbing burning sort of pain.
There are other neuralgia’s out there, there are neuralgia’s that seem to center deep in the ear, or sometimes it’ll feel like it actually localizes somewhere in the throat called (unintelligible) neuralgia.
Dawn: Yes.
Ben Thrower: We tend to kind of lump those together it seems like the drugs that work for tri general neuralgia are our best bet for these other ones.
So things like Tegretol or the generic is Carbamazepine or there is a newer one, Triliptol is usually where we start at for those symptoms.
I think you hit it on the head though, you want to make sure there is nothing else going on so you know, make sure that your primary care doc is giving you a good look in the ears and make sure there is not – not anything infected. And then we kind of back into that diagnosis of neuralgia we don’t have a way of absolutely proving it but you’ve got to rule those other things out first like you have.
Dawn: Thank you and may also ask too please, how does a person know the difference between relapse remitting and the secondary progressive?
Ben Thrower: That’s a good one, again you know we have to be careful with those labels it’s not like secondary progressive and relapsing remitting are different boxes, it’s a spectrum.
So people start with relapsing remitting and that’s most of the time. And over time the natural history of the disease, that is, if we don’t intervene and do something, is that people slowly move towards this secondary progressive form.
And what that means is that the actual relapses are starting to get fewer and fewer in number. But as that is happening, there is slow progression of disability, which is called secondary progressive MS, the person doesn’t have any relapses.
If you look at their MRI there is no active inflammation there maybe a lot of lesions but the active inflammation is kind of – has gone away.
And we don’t know why that happens it’s almost like MS is two different conditions as it goes on. The other thing that we always throw out there is that if you’re on one of the therapies, we had to take that into consideration.
If you’re on therapy we’re not seeing the natural history of your MS anymore. We’re seeing some version of your MS on treatment. And in some of our folks I think what we do is we knock the relapses out with their treatment, but we don’t stop the whole process completely.
So you could still see some progression and disability without being attacked. This probably isn’t secondary progressive MS that’s probably still relapsing remitting.
If you took the person off of treatment you’d see the full picture. So, there are a lot of things we have to be careful about with the labels. The other thing I learned early on from one of the great minds in – Randy Shapiro – is we have to be careful with the P word – the Progressive Word.
You don’t throw that around to lightly because in today’s world if an insurance company wanted to be especially difficult they could come back and say you know, the treatment you’re looking at really isn’t FDA approved for that form of MS and therefore we’re not going to pay for it.
And so the insurance companies don’t deal in subtleties and these nuances it’s black and white for them, either they are going to pay for it or they’re not, just a few things to think about.
Dawn: I understand and I thank you and I don’t want to take too much time because I know it’s running late. But may I just ask quickly legs, when they get heavy, and they are hard to lift and when you walk and it’s almost like dragging both of them any good information on keeping that up so that we can keep what we have?
Ben Thrower: (Tracey) you want to take that one?
Tracey Walker: Yes I think Dr. (Thrower) touched on earlier the importance of exercise and you know I think it’s very important to be in a regular exercise program that incorporates both aerobic activity and strengthening and stretching.
If you’re – if you’re not sure where to start with that or you’ve had not much successes with that in the past I would definitely seek the opinion of a physical therapist. They can evaluate you and make sure that what you’re doing in terms of an exercise program is the best thing to address your particular weaknesses and strengths.
The other thing you know there is a component of fatigue that Dr. (Thrower) talked about earlier, nerve fiber fatigue. And you know there is some medication that may help that.
It’s not yet FDA approved but we do use something called 4-AP. And again, you would have to get that through a compounding pharmacy.
There is a commercial version of that being studied called Fampradine and we’re doing some trials at Shepherd and we’re hopeful that that will be an FDA approved therapy soon for people with nerve fiber fatigue.
Dawn: Thank you and that’s so true as we get tired everything intensifies. I want to thank you so much for your help and just the encouragement and bless you all. Thank you.
Operator: Your next question comes from (Natalie) in Kentucky.
Christine Ratliff: Hi (Natalie).
Natalie: Hi thank you for presenting symptom management as a topic. I have three brief questions, my husband has chronic progressive and he was recommended to no longer take anything by mouth to avoid aspiration.
Is it okay to take water and medicine by mouth, number one. Number two, can you maintain sufficient nutrition with strict tube feeding?
Ben Thrower: You have to be very careful and I’d certainly get the input from your speech swallowing therapist. When they look at his swallowing he may do better with you know certain thicknesses or consistencies and textures.
A lot of times when we see swallowing issues, and that’s the thin liquids the water, it can be an issue. So I’d really get the input from the speech therapist on what is safe.
Sometimes even though it’s not safe for the person to swallow, people miss tasting things and it’s you part of the things we enjoy in life.
So work with the therapist and ask if it’s okay you know, say there is certain food he really likes. It’s okay to let people sometimes have that just don’t swallow and it sounds kind of strange, but you know a lot of the pleasure of eating is the tasting part, and we all know we eat way past when we’re full.
So sometimes just tasting it, and spitting it back out will still satisfy someone. You can get enough calories through tube feeding. So I mean purely from the standpoint of maintaining a healthy weight, that shouldn’t be a problem having the – you know some input from a nutritionist or dietician.
But you know if you’re not working with a good swallowing person I’d definitely keep them in the loop so that you know you are balancing out the safety issues with keeping quality of life in the picture, too.
Natalie: The only problem is that the nutritionist and speech person had suggested thicken feedings. However the pulmonologist suggest that not giving anything by mouth because of the fibrosis increasing because of aspirations.
Ben Thrower: Oh boy. Well you know in that case it’s – usually we go pretty much with what the swallowing said you know this maybe a special situation where the pulmonologist has kind of one more level of precaution he’s going to put up there.
I would probably sit down just one more time with the swallowing person with a copy of the note from the pulmonologist and just say hey, this is what they’re saying is that the final answer. Is there anyway of you guys getting together and coming to a happy medium.
For now I would unfortunately go with what the pulmonologist is saying unless you hear otherwise from both parties.
Natalie: Okay I thank you.
Ben Thrower: Yes, good luck.
Natalie: Thanks.
Christine Ratliff: I think we have time for one more question (Cara).
Operator: Your final question will come from (Thomas) in Wyoming.
Christine Ratliff: Hey (Thomas).
Operator: (Thomas) your line is open.
Jonna: Well it’s actually not (Thomas), this is (Jonna).
Christine Ratliff: Hi (Jonna).
Jonna: I could have…
Ben Thrower: This lady is a troublemaker we know her.
Christine Ratliff: Yes she is.
Jonna: Well the reason I called into tonight, the girl that called in earlier and was asking about the L300 from Bioness.
Ben Thrower: Yes.
Jonna: Have her call the Foundation – call Chris and I’d love to give her more information. Because it’s an awesome thing, you know I talked about it on the cruise, and I would be willing to get her or anyone more information.
Christine Ratliff: Thanks (Jonna).
Jonna: About the L300…
Christine Ratliff: Thank you that would be great, okay we’ll do that thanks for the call.
Jonna: Oh you’re welcome.
Christine Ratliff: Take care.
Jonna: Thanks you too, bye.
Christine Ratliff: I just want to remind everyone that we are almost out of time for our National MS Hero Awards, the last day of March is the deadline. So if you know an MS hero – that can be a person with MS, a person who cares for someone with MS, an advocate for the MS community, or a healthcare professional that you would like to nominate – please call us at 1-888-MSFocus that’s 673-6287.
Or go to our Website www.MSFocus.org.. I will add that (Ben Thrower) because he is our Medical Advisor cannot be nominated, unfortunately.
Ben Thrower: Does that mean I don’t get the cash prize that goes with that?
Christine Ratliff: You don’t. And the grand prize winner of that MS Hero Awards will get passage for two on next years Cruise for a Cause.
Ben Thrower: Oh wow.
Tracey Walker: Wow.
Christine Ratliff: So that’s kind of exciting. Again –anyone that has a question or wants to give feedback on the teleconference or anything at all, please send me an email at Chris@MSFocus.org, or give us a call.
Thank you all for joining us and thank you to (Ben) and (Tracey). And we’d also like to thank our educational sponsors for the month, EMD (Serono) and Bayer Healthcare Foundation.
Ben Thrower: Thanks Chris for all you do.
Theresa Walker: Yes thank you Chris.
Christine Ratliff: Thank you so much, have a good night.
Tracey Walker: All right.
Ben Thrower: Good night.
Christine Ratliff: Good night.
Operator: That concludes today’s teleconference you may now disconnect.
END