Chat Transcripts

National MS Education and Awareness Month 2007
Chat Transcripts

"Living Well with MS"

Moderator: Christine Ratliff
March 14, 2007
7:00 pm CT

Operator: Good evening. My name is Matthew and I’ll be your conference operator this evening. At this time I would like to welcome everyone to the Living Well with MS conference call.

All lines have been placed on mute to prevent any background noise. After the speaker’s remarks there will a question and answer session. If you would like to ask a question during this time then please press star followed the number 1 on your telephone keypad. And if you would like to withdraw your question press the pound key.

Thank you. I will now turn the call over to Ms. Christine Ratliff the editor of MSFocus, the national publication of the Multiple Sclerosis Foundation. Ma’am, you may begin.

Christine Ratcliff: Thank you so much, Matthew. Good evening, everyone. I apologize for our delayed start time. I appreciate it if you hung in there and are still with us. As you know the Multiple Sclerosis Foundation has designated the month of March as National MS Education and Awareness Month. We’re delighted to welcome you to our national MS Education and Awareness Month teleconference series.

Tonight we’ll be addressing Living Well with MS with Ben Thrower, MD. A board certified neurologist specializing in MS. Dr. Ben is medical director of the MS Institute at Shepherd in Atlanta, Georgia. He is also an associate clinical professor of neurology at Emory University.

Dr. Ben specializes in early and aggressive treatment of MS, patient education, physical rehabilitation and MS research. Dr. Ben answers questions on our Ask the Doctor forum, presents annually on the MS Cruise for a Cause and also serves as medical advisor to the MSS.

Dr. Ben, welcome to the program.

Ben Thrower: Thanks, Christine, and I’d like to echo what Christine said also and thank you to everyone for hanging in there. For any of you that I’ve worked with you know one of my pet peeves is being late and even more so for myself.

Tonight my children were very, very efficient in recycling which we teach them to do. Unfortunately they recycled the phone number that I was calling in on so I’ve been going through lots of different stuff through the house and fortunately we were able to get through.

Christine Ratcliff: Well, better late than never. Right?

Ben Thrower: Absolutely. They did a good job with the recycling. I’m actually trying to put little shreds of paper together down there. It wasn’t working too well.

Christine Ratliff: Okay. Dr. Ben, is it possible for a person to live well with a chronic, incurable, unpredictable illness like MS?

Ben Thrower: Absolutely. And I think one of the key concepts to get across is if you look up wellness in the dictionary a lot of it refers back to your health and it would seem to imply your physical health.

And, you know, if you were using this strict definition you would say well, gosh, how can I be well and have multiple sclerosis or any other long term health problem but clearly people with multiple sclerosis or any health problem can still live well.

One of the things that we were taught in medical school is that all of us as humans are pre-clinical for something. We’re all going to get something at some point in our life and we can’t let that dictate the course or quality of our lives.

I think a lot of wellness has to do with your happiness, your financial health, your emotional health, your friends, your family. There’s so many things that go into being well.

Christine Ratliff: That’s a really good point. How might a person begin to incorporate wellness into their life?

Ben Thrower: I think when we look at wellness from our standpoint we realize that for me as a doctor or for, say, my nurse practitioner then no one aspect, no one doctor, no one nurse has all of the answers for the person with multiple sclerosis. You’re really looking for balance.

From a healthcare standpoint that means we have to have physical therapists and occupational therapists and nutritionists, and psychologists and, you know, case managers to help with all these things that could come up from MS.

I think for the person living with MS they should strive for balance also, you know, looking at their emotional heath, their physical health, look at those supports or structures all around them. It really does take a whole team to live well with multiple sclerosis or really to live well in general for anyone.

Christine Ratliff: Okay. Matthew, do we have any questions on the line? Matthew?

Operator: I’m sorry. At this time we do have a question from Howard Goldberg from Florida.

Christine Ratliff: Thank you.

Howard Goldberg: Hello, Doctor.

Ben Thrower: Hello.

Howard Goldberg: The question I have concerns primary progressive MS. I was diagnosed July of 2005 and my symptoms have obviously progressively gotten worse and worse very slowly.

I’m presently getting ready to take my seventh treatment of Tysabri. I haven’t had any effects as far as the progression slowing down and everything that I’ve read that number one is approved by the FDA is for people with relapsing remitting.

Now, what the discourages me is I’ve never read anything for clinical trials or anything being done for the people who have primary progressive and I’m starting to think that the reason why relapsing remitting is getting more attention is because 80% of the people so they’re in the higher percentile and the people with primary progressive like myself are in the lower percentile, 20%, so I feel like and I’ve spoken to other people, we feel like we’re being left behind.

Ben Thrower: Unfortunately there may be some truth to that. And one of the things when I was first getting into the MS world and we were setting up an MS center we started to look at who were all the different people involved and what is their agenda.

So, for instance, if you look at the drug companies. They do some very good things. They do great research but you’re right, at the end of the day they are businesses and if 80, 85% of people present with relapsing remitting MS and to make it even maybe a little more sort of lopsided in favor of relapsing MS it’s probably an easier condition to treat.

It has much more of an inflammatory component and most of the drugs that we have had that we have right now, some of the things on the horizon really are very good anti-inflammatory drugs so it’s a harder condition to go after.

That’s not to say that there’s not hope though. When we see someone with primary progressive MS we point out to them exactly what you just said. That there is no FDA approved drug to slow progression but based upon what we know there is research going on right now with a drug called Rituxan or rituximab. That trial is ongoing. Hopefully we’ll wrap up in about a year.

Technically you’re using Tysabri off label. And Tysabri’s approved more for relapsing or, you know, sort of refractory forms of relapsing MS. We can use Rituxan off label.

It is an FDA approved drug for both rheumatoid arthritis and for non-Hodgkins lymphoma. So, you know, I would argue for someone like yourself that if Tysabri didn’t do what you want you might talk to your doctor about Rituxan.

Copaxone is in the trial in primary progressive MS. It was technically a negative trial. The treatment group and the placebo group did not look significantly different in two years but you could argue that the researchers may have guessed wrong.

They had predicted that the untreated group was going to progress much more aggressively than they did and they set up their statistical analysis based on that assumption. At two years the untreated group had actually not progressed nearly as fast as they had thought.

The researchers who set up that trial did an interesting thing. They went back and looked at the year before the trial started and they selected the people with more aggressive progression and it just so happened that those were the men with primary progressive MS. If they only looked at the men in that trial, on treatment versus off treatment, you did see a treatment effect.

So, again, it’s not an FDA approved indication for that drug. We don’t know for sure that that sort of finding would hold up in large numbers of people but, you know, I would say just like you’re using Tysabri there are other things out there that you could potentially try to get things stabilized.

Howard Goldberg: Well, I did try the Rebif at first and then Novantrone. The first neurologist I went to, that’s what she prescribed and she kept on saying it’s a shame I don’t have Tysabri on the market. It’s a shame they took it off the market.

When I lost my job and I lost my health insurance I had to go on Medicaid and I had to go see a different neurologist and he had just been certified by Biogen through the touch program to prescribe Tysabri so I now travel 30 minutes to go see him just so I could get the prescription.

That’s all I’ve ever heard is from the first neurologist, even the oncologist who gives the Tysabri, both were saying it’s a shame they don’t have Tysabri. I’d like to see them bring Tysabri back on the market.

My neurologist had told me that she had a patient who was in a wheelchair 21 years and after her second treatment she was up walking with a cane with Tysabri.

Ben Thrower: You know, with the Tysabri, we know that it works in relapsing forms of MS. I don’t think we have anything to say that it works in progressive, in primary progressive MS.

In the trials of relapsing MS there were some hints that it does have what we call neuroprotective potential. In other words it might work in MS when there is no inflammation like primary progressive MS.

But I would argue, we might have a little more information for an option like a Copaxone or Rituxan. There is a little bit of data on Novantrone out there now. There was a trial up in New York looking at Novantrone in primary progressive MS and they did see some response.

I think when we start any of these drugs in a person with a progressive form of MS we tell the person there are really three possible outcomes. Either you get better, or you get nothing or you stabilize – and what we’re hoping for is that you stabilize.

If you got better that’s icing on the cake. We would love that for everybody but at the same time I don’t want to give someone unrealistic hopes.

There’s also the possibility that you get nothing, that you continue to progress. I think I would set the bar at will stabilize you. If you get more than that out of treatment that’s wonderful but I wouldn’t necessarily consider a treatment a failure if it didn’t do more than just stabilize you.

Again, we’d love for you to get better also but I don’t know that all of our treatments, even Tysabri when it works well, do that for everybody.

Christine Ratliff: That was an excellent point that you brought up. We hear that often that people with progressive forms of MS feel left out. And I’m glad that you called. Matthew, do we have another question that we can take?

Operator: Sure, before we go to that question, if you have a question press star then the number 1 on your telephone keypad. Again, star then the number 1 will get your into our question queue. And our next question is from Anita Franklin from Georgia.

Ben Thrower: Hi, Anita.

Anita Franklin: Hi, Dr. Thrower.

Ben Thrower: How are you doing?

Anita Franklin: My question is - I’m doing great. I was originally diagnosed with relapsing remitting multiple sclerosis in 1992. I’ve actually seen you once for trying to get involved with a research study which I think I should get involved in. I’m wondering if once being diagnosed with relapsing remitting, does that diagnosis ever change in the process?

Ben Thrower: It does. If you start with relapsing remitting and that’s what most people do. About 85% of people will present with that form of MS. The problem is it doesn’t stay there without treatment. If you look at the person with relapsing remitting, and that’s at ten years, about 50% will have moved on to the secondary progressive form.

And really it’s almost like a transition to a different disease because you’re going from a very inflammatory sort of problem with relapses or attacks, a lot of inflammation on the MRI to more just slow progression of symptoms without attacks and very little inflammation on the MRI.

One of our goals I think is to try to keep people from making that transition because I think our therapies do work better early on. There is another drug coming down the line in research that has being specifically geared for secondary progressive MS. I’m hoping that they apply that to primary progressive MS as well because the issues are very, very similar.

The other problem is if a person is on treatment we don’t really know what the natural history of their MS is. We have people that will come in and say, gosh, I’m on drug X and I haven’t had an attack in a long time, how do I know I haven’t moved to secondary progressive.

Well, the hope is they’re not having attacks because the drug is working for them, not because they’re moving on to that more progressive form.

Anita Franklin: Okay. Well, I don’t kind of fall in that category because I really haven’t had any treatment in the last couple of years because of insurance.

Ben Thrower: Are you still having relapses at this point?

Anita Franklin: I think - I know last year I had a relapse according to Dr. (Jaquez) but I’m not sure whether or not earlier this year when I came in to see her whether I was coming off of a relapse or if it was just something else in my system causing me to have symptoms.

Ben Thrower: I see. And hopefully –

Christine Ratliff: Ben, I’m sorry. Do you think that you could speak just a little bit about how a person will know if their therapy is working.

Anita Franklin: Yeah, that’s a good question.

Ben Thrower: That is a great question. Chris always keeps me in line here. So the goal of any of these therapies would be that you hopefully have fewer or no relapses, that you have slowed progression of disability and that your MRI doesn’t change, that you don’t pick up new lesions year after year.

Ideally we get all three of those things. Sometimes we don’t and we have to sort of well, how much would one of those would we be willing to put up with.

Not all MS centers do follow up MRIs but that is something that we incorporate into our follow up to make sure that the therapy is doing what it is supposed to do.

Most of the time these therapies are not going to make you better. Again, what we’re really shooting for is stabilization. If you improve over time, again, that’s wonderful but I think a goal, a realistic goal is stabilization.

Anita Franklin: Okay. Thank you, Dr. Thrower.

Christine Ratliff: Matthew, do we have another question?

Operator: Sure do. Our next question’s from Maranne Stewart from Iowa.

Maranne Stewart: Hi, Doctor. I was just wondering what you thought about low dose Naltrexone because I’m having a lot of difficulty getting my other medicines and even though it’s not a prescribed FDA approved process a lot of people are taking it about 25 milligrams at night and seem to be doing well. And from what I read there’s a clinical going on out in California about that right now.

Ben Thrower: It’s an interesting looking medication and I would just say be cautious on the Internet with this particular one and I’m sure you’ve seen there are a lot of sites out there and I think this is an interesting drug that should be looked into but it worries me a little bit that on some of the web sites they’re almost touting it as a cure.

The Naltrexone works by blocking opioid receptors. What it’s FDA approved for is to help people detox from prescription painkillers, the heroin, morphine opiate sort of medication. Hopefully, it’s now used to help get people off of alcohol.

We know that those opiate receptors in the body do have some interaction with the immune system and a lot of the authority using the Naltrexone in immune problems really goes back to when HIV first hit in the United States and they found that if someone was a heroin abuser and became HIV positive they converted to full blown AIDS much more quickly and the thought was well, maybe it was what the heroin was doing to these opiate receptors and doing something to suppress the immune system in a bad way. So the thought of doing this goes back quite a ways.

There’s another line of reasoning that questions whether Naltrexone could be directly protective in the brain and it doesn’t work through the immune system. Maybe it has a direct protective effect. I think low dose Naltrexone is safe. I don’t see any big risk to it. It’s reasonably inexpensive.

You’re probably going to meet with different degrees of willingness to use it out there in the neurological community from people who are fairly open-minded if they say well, gosh, you don’t have a lot of other options to maybe doctors and providers to just say nope, it’s not FDA approved, I’m not going there.

Maranne Stewart: That’s my doctor. He’s (unintelligible) approved, can’t do any of that.

Ben Thrower: Look around and see – I mean, if you can’t find somebody. Again, I think it’s relatively low risk. And you raise another interesting point. The one thing I hate to hear happen to people is that they’re not on a therapy because they can’t afford it.

Make sure that you’ve talked to a case manager or someone with the MS Foundation, the National MS Society. If you’re really – If the only thing keeping you from being on treatment is financial barriers, make sure that someone has exhausted every resource out there for you because there are a lot of little pots of money here and there that can be tapped into.

Maranne Stewart: Yeah, I just found out about NORD (National Organization for Rare Disorders) and they just sent me the application so I’m waiting my five weeks for them to get back with me on the Copaxone.

Ben Thrower: Good. And see if there are clinical trials somewhere in your area also. A lot of the research that’s going on involves one FDA approved drug versus another or, you know, two different doses of an FDA approved drug so there’s no placebo group in some of the research studies. And your medicine’s paid for, your doctor’s visits, your MRIs, everything would be paid for in those sort of projects.

Maranne Stewart: All right. I know that there are things going on in Des Moines and I will check into that. Thank you so much for your time. I appreciate it.

Ben Thrower: Yeah, good luck to you.

Christine Ratliff: And I’d like to everyone know that if they would like to know more about the LDN trial or if they would like to know about any clinical trials you can send an email to me. My email address is Chris, Chris@MSFOCUS.org. You can also call the caseworkers at the foundation and that number is 888-MSFOCUS. That’s 888-673-6287.

And if you are on the line with a question tonight and we don’t get to you, you can also email or call and I will see that your question gets to Dr. Ben and I will try to get it answered for you. Okay?

So, Matthew, do we have another question?

Operator: We do have another question and it’s from Virgina Pinter from Maryland.

Virgina Pinter: Hello?

Ben Thrower: Hi, Virgina.

Christine Ratliff: Hi, Virgina.

Virgina Pinter: Hi. I’m second stage of MS and I’m not feeling very well. My equilibrium is off and I know that there is a patch – excuse me – a patch that you can put behind your ear and I just want to know if there is anything else that I could, if my doctor (avails) for my second stage because he’s already told me - and I forget a lot and I’m on Aricept and if there is other medication for that. And as you can tell my voice is kind of slurred.

Ben Thrower: Yeah. You know, raised some great points. In progressive forms of MS, even if we don’t have the perfect answer in terms of something to stop progression we can always do things to improve quality of life. The balance issues that you’re talking about, there a lot of different things that can affect balance in MS.

What I see is most common is actually not the inner ear or vertigo-type of problem, it’s actually loss of sensation of the feet. And if you can’t feel where you’re feet are at people walk like they’ve had a drink too many.

And using something like the patch you’re talking about, if this is the problem, probably wouldn’t help. That’s called a transderm scopolamine patch and it’s sort of a motion sickness patch.

If you have vertigo, when you move the room starts spinning, the patch might be worth trying out. If it’s more the loss of sensation in the feet, one good clue would be do you have more trouble walking whew it’s dark or on uneven surfaces because then you’re taking some of those visual cues away and people tend to have more trouble at that point.

What we found is if you really work on strengthening the core muscles, we’re not fixing the sensory problems but people walk a lot better, their balance is much better beaus they can compensate for that lack of sensation.

The things like Pilates and yoga, you know, any of these things that strengthen the core, Swiss ball, that yoga ball, those sort of workshops where they make you use your trunk muscles, hypnotherapy or therapy done on horseback if you have access to that, all of these things are really good for asking these muscles stronger in the core.

Now along with hypnotherapy we know everyone doesn’t have access to a horse. They are starting to sell some sort of artificial horseback riding devices at places like the Sharper Image and Brookstone. We’re waiting for the price to come down.

They’re a little out of range I think for most people. They’re in the $4000 range. But if it’s like most technology the price will come down or someone’s going to buy one and not want it, you’ll start seeing some used ones show up.

But I would encourage you to look at ways of strengthening if you haven’t seen a physical therapist for your balance I would definitely do that. It sounds like you could also maybe benefit from working with a speech swallowing sort of therapist.

A lot of the speech therapists work with those memory issues. Again, they can’t fix it but they’ll look at what the problem is, they’ll look at what it is you like to do in your typical day, where you’re having trouble and try to come up with some strategies for helping you work around those things.

I guess the last thought is just on the memory medications. The other drug we use outside of Aricept is Nemenda which is another FDA approved drug for Alzheimer’s disease. There is research starting right now in that. Just like you’re using Aricept you could use the Nemenda off label.

There is a research projects starting right now with a new drug for memory for multiple sclerosis called levoamphetamine. It’s the cousin of dextroamphetamine, the stimulant.

It turns out that the mirror image levoamphetamine tends to improve memory without giving you all the hyperactive stimulation. So those things are striating up right now.

Virgina Pinter: Well, I also have depression so I have the psychiatrist plus I have the neurologist and they both don’t know what to do with me.

Ben Thrower: I would make sure they’re talking to each other as much as you can. It’s frustrating if you have to advocate but sometimes someone does have to step in and make sure that the healthcare providers are communication with each other.

I would be aggressive in truing to get the depression under control because it certainly, it magnifies so many of your symptoms especially the memory loss.

If you talk to someone with depression that doesn’t have MS, they’ll tell you their memory is horrible and it’s really not their memory, it’s their attention and concentration.

If we could make your depression your memory’s going to look a whole lot better also. Sometimes the depression’s easier to go after than the memory losses from the MS itself.

Virgina Pinter: Okay. Well I thank you very much for talking with me.

Ben Thrower: Thank you and good luck to you.

Virgina Pinter: Thank you so much. Bye.

Christine Ratliff: Bye-bye. And again, I want to remind anyone that if you want more information on depression or on cognitive or swallowing issues, any of these things that we’re speaking about tonight, do call us or email me. The phone number again is 888-MSFOCUS. That’s 888-673-6287.

Do we have another question, Matthew?

Operator: We sure do. It’s from Darlene Stephens from Kentucky.

Christine Ratliff: Hi, Darlene.

Darlene Stephens: Hi. Actually I’m concerned because I have lost a lot of the sensation in really 90% of my body and the neurologist that I’m seeing now has me on steroids once a day one day a month and it does not seem to be affecting it, my MS and it’s got me concerned because it seems like I’m having more of the relapsing. Do you have anything that I could possibly do?

Ben Thrower: If something like pulse steroids or the steroids once a month aren’t working we want to make sure that we’ve given them enough time and no one agrees how much, how long that should be.

I would say with something like steroids, certainly if you’re not seeing some positive effect after six months I would probably think about doing something else.

And depending on what you’re been on before, I mean, there may be a lot of something else’s out there. If someone has used a lot of the standard medications, the ABCR drugs and those are not working out, some of the things we mentioned earlier tonight, the more aggressive medicines like Tysabri and Novantrone, they have a place.

We sometimes pull a drug called immunglobulin out of the hat. It’s a drug that works really well for some people with MS. It’s also given on a once monthly IV basis.

Darlene Stephens: Actually the neurologist that I’m seeing is a different neurologist from the one that diagnosed me.

Ben Thrower: Okay.

Darlene Stephens: And the one that diagnosed me really does not want me on the actually accelerated Solu-Medrol. He does not want me to have it all that often and I found in doing this since the first of the month with this new neurologist but I’m at the first of the year but like I said I keep on having these relapsing with it and I’m just – it’s got me concerned.

Ben Thrower: The IV steroids or even oral ones, you do have some risk. They’re not completely side effect free. If you use them on a regular basis you can see all of the things we don’t like to see with steroids like bone thinning and blood pressure going up, blood sugar if you have any predisposition to diabetes are all things we have to watch.

A lot of doctors are not thrilled about using those on a long term basis. I think most people are comfortable using them for acute relapses, just give you three, five-day something like that and then get you right back off of them.

I would sit down and talk to the new guy and say, listen, what’s the plan, how long are we going to do this and at what point do we say this isn’t working and what’ s Plan B or C or D after that.

Virgina Pinter: Okay. Well, I appreciate it.

Ben Thrower: Good luck to you.

Virgina Pinter: You’re welcome.

Christine Ratliff: Ben, I feel like we’re getting off a little bit on the progression and the drug treatments which is fine but might you speak for just a few minutes about other things that people can do such as the therapies and the symptom management, -

Ben Thrower: Absolutely.

Christine Ratcliff: - things along those lines that improve their quality of life.

Ben Thrower: Absolutely and, you know, one of the things that I feel very blessed about in my life is that I work in a center where I have all of those other pieces of the puzzle, the physical therapists, someone like Rob Godsall who spoke with you folks last week on the cognitive and emotional parts of MS.

I’m a big believer in taking care of the basics first. Make sure you’re doing the things that all of us should be doing, that you’re eating a reasonable diet, that you’re exercising. That exercise piece is the one thing that has been shown to consistently bump up energy levels.

It’s a real catch 22 when the person with MS is well, I have fatigue, how am I supposed to exercise when I’m tired already. There is sometimes a little hump that people have to get over to get into that mode of regular exercise. Sometimes it takes maybe a physical therapist or a personal trainer to help the person get sort of in that mode.

One of the groups I think that does such a great job of custom designing exercise plans for people with MS are the Jimmy Huega folks out of Vail, Colorado.

They also take their show on the road throughout the year and really help people come up with, you know, what is the best way for you to be well with your multiple sclerosis.

It’s interesting when you – and this is a good example of that tonight we as doctors, we do tend to sometimes to overgravitate to the medication. We just did a survey of community neurologists and asked them now would you manage muscle tightness or spasticity of spasms and 96% of them talked about using the medication that are out. They’re things like Baclofen and Xanaflex.

Only 16% of them talked about having the person do any stretching exercises or referring them to a physical therapist. And really it should be the other way around. You should think of those therapy exercise options first so that maybe we could avoid the medications if at all possible.

Christine Ratliff: Right, right. Now would be a good time to mention that on March 21 we’re actually doing a third teleconference with a personal trainer who has MS and that is called Exercise For Everybody and that will hopefully give some of you some ideas for ways that you can incorporate fitness into your life whether you’re in a wheelchair or whether you have balance issues or whatever the situation is so that could really be helpful. What else, Ben?

Ben Thrower: You know, not to talk too much about the exercise but it’s just been amazing to me how quickly someone can decondition with MS and the good news is they can just as quickly re-condition.

When we see people becoming more active it seems like their energy levels go up, their mood improves, they become maybe less socially isolated. So a lot of things can really get better if we can get people moving a little bit more. Like you said, it doesn’t’ matter what your level of ability is, there’s something out there really for everybody.

You know, the other things that I think are very important is having some kind of peer support system and it’s going to be different for everybody whether it’s a spouse or family member, a friend, a support group through something like the MS Foundation.

One of the things that I’ve always thought is very hard for me to see is we’ve worked with people over the years with MS and we realized, you know, we’ve never seen a family member.

They always come in by themselves and it seems to me sometimes that those people have a little harder time than someone who does have, you know, someone that comes in with them.

If nothing more than just having a second set of ears. I think all of us have had the experience of going to a doctor’s appointment and coming out and going, you know, I don’t remember half of what they just said because it went so quickly. It’s nice to have that other person there to sort of verify for you, you know, what it was that went on.

Chris, you and I have done programs on how to get the most out of your healthcare provider. I think that’s an important piece of that wellness, making sure you have a partner in your healthcare who fits for you. And it may be personality, it may be that they have enough time to sit down with you and answer the questions that you have.

And, you know, there are a lot of little tricks out there of how to make sure those systems work, things like emailing your questions ahead of time or writing your concerns down and making sure that all of those concerns are addressed.

I really like for the person to show me their list right up front so that I can go down it and say, you know, problems one, three and five really kind of go together and we can put those into one category and maybe address those as a common concern.

Christine Ratliff: Right. Right. And what happens if – now you work at an MS center and you have, you know, like you said, all of the healthcare providers pretty much right there.

What happens if a person is, say, in a rural area or their neurologist is not an MS specialist and they bring up some of their symptoms like perhaps depression and the doctor either doesn’t really get it or doesn’t really offer strategies. What do you think, what should that patient do then?

Ben Thrower: And it is- that’s the more common situation. Most people in the United States get their MS care not in an MS center but out in the community. So I think most people do have the potential to struggle with that. I think that – I wish that I had all of the answers.

I really – you can sort of put together, if you will, an MS center without walls in some communities. You can sort of know what your resources are. Most communities have a physical therapist who has some interest in MS and sometimes it’s a young bright person who just has to be sort of, you know, brought into that MS community and sort of mentored to be the champion for MS.

I think in some communities it’s going to be whatever non-profit group serves that community best whether it’s the MS Foundation, the MSAA, the National MS Society.

Most of the National MS Society chapters do keep a referral list so that, you know, maybe the neurologist doesn’t know well, who is a good physical therapist, who’s a good psychiatrist to work with and that hopefully the National MS Society would be able to give some guidance.

I have seen chapters where the list is way out of date and it’s just no good to anyone. So in those situation maybe the support group themselves takes on sort of a little bit of an advocacy role and works with the chapters and say, you know, we need to start identifying healthcare providers whether it’s physical therapy or occupational therapy who have an interest in working with multiple sclerosis.

They don’t necessarily have to be experts and I don’t mean to sound flippant but, you know, MS really is not rocket science. It really just takes someone who cares and is willing to sit down and listen and learn a little bit.

You know, right now we have a certain number of options to treat different symptoms and it’s just a matter of, again, with only having a person who’s willing to sit down and listen at that point.

Now, what tricks have you found out there, Chris, for sort of building networks of healthcare providers who work with MS because I know you guys try to some of this also?

Christine Ratliff: Right. Well, a lot of the things that you said. I’ve noticed a real difference with people when they get peer support, when they join a support group. I know more about the emotional coping and the healthcare issues.

You know, people that don’t want to join a support group because they think it’s a pity party and then they go to a support group and they make a friend or a few friends and the difference that it makes in their life because they can talk to someone else who understands what they’re dealing with and people that come on the cruise, the same thing, you know?

A lot of people think that if they stay in denial that they’re safe but really when they come out of denial and start to learn and start to talk to other people I think that’s when the fear really lessens for them, you know, and a lot of people I think have a fear of being around people who have a worsening form of the disease.

You know, they don’t want to go in a room with people with wheelchairs because then they get afraid that that could be them but the truth is that MS can progress but it doesn’t always progress. But those people in the wheelchair might be wonderful people who can offer all kinds of insight regardless of where they are in the disease course.

Ben Thrower: Great point.

Christine Ratliff: Yeah, and I feel that everyone that has started any kind of exercise program at all even seated yoga or stretching in their bed with a care partner, they all notice so many benefits pretty much right away. They feel so much better so I can’t encourage people enough to do that.

Matthew, do we have another question?

Operator: We sure do. It’s from Elise Nelson from Iowa.

Christine Ratliff: Great. Thank you.

Elise Nelson: Hi, Doctor.

Ben Thrower: Hi.

Elsie Nelson: I was diagnosed with primary progressive in August of last year and I’m not on therapy but I found out that since I came home which is northeastern Iowa we had a major snowstorm and I spent a lot of time shoveling and when I found out that I had to do it again my body just felt like a massive bowl of jelly and was going unh-unh. I’m also noticing I’m having brain disconnects between me and – or my head and my feet. Is that normal?

Ben Thrower: It is. Well, I was taught that, you know, our brain and our spinal cord is just a big wiring system basically and the brain is the controller and the spinal cord is just basically a big bundle of wires and that’s exactly what MS is for some people is a disconnect especially with primary progressive where a lot of the demyelination really is in the spinal cord much more so than the brain.

You know, I think you described things that are common for primary progressive that, you know, a lot of trouble with weakness and with exertion. Shoveling snow is certainly exertion. It tends to get worse.

What we see in MS is those demyelinated or naked nerve fibers, they work up to a point and then what happens is that they sort of, you drain the battery. So if you get out to shovel snow you may start off at a certain pace and the further you – the more you go the weaker you’re getting. There are some potential ways of dealing with that.

One would be to use cooling vests. And that sounds kind of odd to use a cooling vest when you’re out shoveling snow but as you know you can still sweat shoveling snow.

So when you get into summer or warm weather activities, if you find that your feet get numb or you get weak or your vision goes out with that increase in core body temperature, the cooling vest can be great.

There’s an oral medication called 4 (aminopuritine) or 4AT, capital A, capital T that actually helps people go longer before they hit that wall but right now it’s not FDA approved but it can be compounded.

It runs 50 bucks a month thereabouts. Compounding pharmacists can make it with a prescription. Hopefully it will get FDA approval this year.

There’s a form of that drug called (Fampurdine) that is going through it’s last round of testing right now. The first two rounds looked really good. It was shown that we can make people walk faster and we can make them stronger with that medication.

Elise Nelson: Faster would be lovely because I’ve noticed - I live on a hill and I’ve noticed that if I walk down the hill and walk on a flat surface my speed seems to be somewhat normal but then when I turn around and start to go up the hill it’s like I hit a stop sign and I can hardly walk. I make it but it seems like my speed has just dropped down to almost nothing.

Ben Thrower: Ask your doctor about something like the (4 aminopuritine) and see if they’re familiar with it. If there’s a study site near you, again, that trial’s starting right now so that’s another way of getting on the medication to see if it helps you.

Elise Nelson: Right. Right. Do you know if there might be anything like, say, at the Mayo Clinic in Rochester, Minnesota because that’s about the closest thing to me?

Ben Thrower: I’m sure there is. There’s always something going on there so, yeah, I would check with them.

Christine Ratliff: Yeah, or you could call us or you could email me and we can find that out for you.

Elise Nelson: Okay. Thank you.

Christine Ratliff: Thank you.

Ben Thrower: That’s a good rule in life. When in doubt, ask Chris. That’s what I do.

Christine Ratliff: And when I’m in doubt I ask you so it works out pretty well. Matthew, do we have another question?

Operator: Sure do. It’s from Wendy Nelson from Michigan.

Christine Ratliff: Thank you.

Wendy Nelson: Thanks for taking my question.

Ben Thrower: Hi, Wendy.

Wendy Nelson: Do you think it’s common for somebody that has MS to have a high rheumatoid arthritis number? Like in September when I had by bloodwork done my (R-APAX) was like 30 and I just had it done two weeks ago and it was 22.

So now my primary care doctor wants to send me to a rheumatologist. Is it common because MS is an autoimmune and so is rheumatoid arthritis or do they go hand in hand?

Ben Thrower: I think more of the former. What we see in especially the women with MS is that some of those blood tests for other autoimmune conditions like rheumatoid arthritis or lupus, a lot of times those blood tests come back a little bit abnormal, another time they’re back down to a normal range, you do them again they’re back up.

Most of our folks with MS that we work with would not meet the definition for another autoimmune condition but it’s like their immune system almost flirts with it.

I think seeing a rheumatologist is still a good idea just to make sure that there is not a second condition going on but I would suspect what’s going on like a lot of people with MS where those blood tests are going to kind of come back abnormal here and there but hopefully you’ll never actually have that second autoimmune condition.

Christine Ratliff: Does that answer your question?

Wendy Nelson: Thank you.

Ben Thrower: You’re welcome.

Christine Ratliff: Can we take the next call?

Operator: Sure. Our next question is from Beverly Queen from Colorado.

Christine Ratliff: Hi, Beverly.

Beverly Queen: Hi. Okay. My question is I’ve called the National MS Society for a support groups. I’ve been told because I have a mental condition also that I can’t go to a support group. Is that normal?

Ben Thrower: That’s kind of an odd thing for somebody to tell you. I’ve never heard anyone told they can’t go to a support group. Yeah, I would maybe look around unless you’re going there and starting fights or something that’s kind of an odd thing to say.

Beverly Queen: No. I’ve never been to one.

Ben Thrower: Yeah. Chris, have you ever heard of that?

Christine Ratliff: Not at all. No. Call us and see about support groups.

Beverly Queen: Okay.

Ben Thrower: I do run into occasional outlying areas where there’s not a support group and, you know, sometimes somebody has to take the ball into their court and just start one on their own but, no, I’ve never heard of someone being told they can’t go.

Christine Ratcliff: No, not at all. Call somewhere else.

Beverly Queen: Okay.

Christine Ratcliff: Okay?

Beverly Queen: All right. Thank you.

Ben Thrower: Thank you.

Operator: Our next question is from Mary Segura from Michigan.

Mary Segura: Oh, hi. Hi, this may kind of sound like one of those drug-related questions again but I was just diagnosed in January of 2007 and actually at the beginning of this year I thought I was like okay and then I had a bout of optic neuritis and I was treated with a five day course of IV steroids and it did clear up and then in February I had another attack and then I like could barely walk and I had tremors and like all kinds of – weakness and that sort of thing.

So I’ve already been through three different neurologists and I kind of like the third one. He’s an older gentleman but he is already talking to me about Tysabri and I’m a little confused about, you know - I did Copaxone and I had an allergic reaction and so now I’m starting on Rebif and I’m still in the – I’m just switching from the 8 to the 22 since I’m on a titration pack.

But I was a little concerned about why he’s talking to me about Tysabri so soon into all of this and I was wondering, you know, what your take would be on that? Like is it because I had the two back to back attacks pretty much you think that he would do that?

Ben Thrower: I think what you’re going to see is everyone has a different comfort level with Tysabri. It’s clearly an effective but as you know it has some risk associated with it and the problem is we don’t really know what the long term risk is. Our hope is that it’s going to be very, very low but we really don’t know that for sure.

My feeling is that I would like to see someone who really has tried all of the reasonable sort of first line injectable drugs, you know, an interferon up to a high dose like a Rebif or beta steron, Copaxone, maybe even look at – sometimes we’ll do combinations of one of those drugs with something that is relatively low risk.

If we do - again, we’ll use Tysabri but I wouldn’t say it’s certainly not a first line choice and usually it’s set for people who have failed a couple of different drugs. If someone’s going downhill very, very quickly with relapses sometimes you do have to try to get things back in control quickly.

One of the things that we do is use a very, very short course of Novantrone just three months in a row to sort of reset the immune system. Sometimes we found that really (unintelligible) back in line quickly and then let the injectable drug have a chance to work after that.

Mary Segura: Okay.

Ben Thrower: So there are all kinds of options out there.

Mary Segura: Okay. Thank you.

Ben Thrower: You’re welcome.

Christine Ratliff: Also, if anyone wants to ask a question, Dr. Ben answers questions on our Web site, on our Ask the Doctor forum. If you go to www.MSFOCUS.org and click on our forums icon you can post questions to him and several other doctors so feel free to do that. Matthew?

Operator: We have another question from Lynn Rodens from Maryland.

Christine Ratliff: Hi, Lynn.

Lynn Rodens: Hi. I was wondering if it’s possible that any lesions can disappear if you have MS from one MRI to another?

Ben Thrower: They can. What happens when they disappear is you’ve caught the lesion on an MRI when it’s really, really new and a lot of a new lesion when it’s, say, eight weeks old or less is just water, it’s edema and so as that inflammation, the water part, goes away sometimes the lesion actually shrinks so much that you can’t see it anymore.

Once a lesion’s been there for more than a couple of months the chances are it’s probably going to be there for good but that doesn’t mean that it’s necessarily causing a lot of trouble.

What’s a little interesting right now is that when you look at remyelination in a lesion versus demyelination they look the same on an MRI so some lesions that show big white spots you can show fairly normal brain function through that lesion.

So it’s a little misleading too when you look at some of the research. Some of the drug trials have shown that, you know, drug X, that the person started with X number or volume of lesions and after they started treatment that they had less.

It always bothers me a little bit when the drug companies do that because if I’m looking at that what I’m thinking is you’re healing, you’re making my lesions go away and what they’re really doing is they’re treating deep with a lot of active inflammation and they’re making the water go away and that’s why the lesions get smaller.

That’s still a good thing but I don’t want people to get mislead into thinking that we’re completely fixing or erasing their lesions. I think that sort of research is ongoing right now and that’s our hope in the future is that we will be able to offer things that just don’t stabilize but actually push the clock backwards.

We want that for MS, for spinal cord injuries, for stroke. That’s sort of the holy grail of neurology and the good news is it’s not just MS folks working on it. All of those conditions have researchers who have devoted their life in fixing damage in the central nervous system.

Lynn Rodens: Thank you very much.

Christine Ratliff: That was an excellent answer. I didn’t know all of that. Let me ask you if someone has a lesion, an MRI with, say, 12 lesions and someone else has an MRI with 1 or 2 lesions, does that necessarily mean that the person with 12 lesions has a worse case of MS?

Ben Thrower: No. Absolutely not. And, you know, that’s human nature. As humans we like to quantitate things and, you know, count the number of lesions or put things in a box, you know, do I have secondary progressive or relapsing remitting or primary progressive?

Really it’s better to probably think of the volume of lesions because what if the 12 lesions are all, you know, a half an inch in size and the two lesions are each as large as a grapefruit.

I’ll take the 12 small lesions any day so we tend to in research we would actually put a number, a cubic millimeter volume on those lesions so that you could directly prepare them. Outside of research what we tend to do is say light lesion load, moderate lesion load, heavy lesion load to try to get an idea.

So the other important thing is we tend to get really focused on the white spots and really what research has shown is the total number and volume of white spots is really not a very predictive of how someone is doing. It’s measures of tissue damage that are predictive of how someone’s doing.

So if you’ve got loss of tissue or atrophy or what we call black holes punched out areas where the nerve fibers have been cut those are actually going to correlate probably better with how you’re doing than just the total volume of white spots.

I think I’ve mentioned to you, Chris, that we’ve got a guy who’s in his late 70s who’s had MS for over 40 years, has never been on treatment and he literally has no normal light matter.

His brain is just an MS lesion and he’s one of the healthiest 70-year-old guys you’d ever see and so he’s a classic example of how sometimes the number of white spots don’t correlate very well with how someone’s doing.

Christine Ratliff: Very interesting. Matthew, do we have another question?

Operator: We do. It’s from Barbara O’Reilly from New Jersey.

Christine Ratliff: Hi, Barbara.

Barbara O’Reilly: Hi, Chris. Hi, Dr. Ben. I’ve had MS on and off since I was 20 and now I’m 58 so it’s 2/3 of my life and I am just sick and tired of having this disease and I wonder what you can do, you know, when there a lot of my friends and we’re in this kind of morose situation that you’re just stuck in it, we do everything we can. We got to support groups, we do swimming, we do all these things and still you’re just, you know, it’s never ending.

Ben Thrower: You know, I think that one of the challenges is the MS is not going to go away and so at least with the current technology we have you’re stuck with this but I think moving past that to figure out, okay, if I can’t make it go away, what is it about my MS that really takes away from my quality of life. Is it fatigue, is it memory loss, and go after those things as much as you can.

Chances are most things that you would struggle with, there are maybe some options whether it’s, like we mentioned earlier, increasing your energy levels with exercise, you know, looking at working with therapists for the memory issues.

It’s interesting where I work at at the Shepherd Center, I only work with multiple sclerosis but we also do spinal cord injury and brain injury or we have doctors work with spinal cord injury.

And we see people that, you know, you have an 18-year-old that who is fine one day and they’re driving to school and they have a car accident and now they’re quadriplegic and it’s interesting how some people sort of can move past this devastating event like MS can be also and then say okay, I can’t get rid of it but I’ve got to go on, I’ve got to live, how can I make the best of it.

And if you’re having trouble, some people do it easily and some people really do struggle with that. I think maybe working with a therapist, a counselor to sort of say what are the tools that I need to sort of move past this. Not to necessarily lay down. We want you to sort of continue to be proactive but just live your life.

And it scares me, sometimes I see people that are so focused on I want to be rid of this and I want a cure now. We want that too but until we get that how do you live your life and how do you have a good life if we can’t get rid of the MS.

Barbara O’Reilly: Well, thank you.

Christine Ratliff: Thanks for the call. The other thing I’d like to add, these sound somewhat cliché but I know that they’re not because I’ve spoken with so many people who have really improved their quality of life through getting a pet, developing a hobby or volunteering. All three of those things just seem to really bring a smile to people’s faces. So think about those if they’re an option for you.

Ben Thrower: I would echo those and especially the volunteering. We have so many people at Shepherd who are patients who also come back and volunteer. One of our very best volunteers is one of the guys with MS that we work with who’d really struggling, a very, very high profile attorney, very successful who is no longer able to work and he was really struggling with why me, you know, I’ve gone from one point in life to somewhere else.

Now he comes in and he works on our brain injured floor with young people who have had traumatic brain injury and he is just so good at what he does and he looks like new person.

He’s just so much happier because, you know, he’s moved from one goal in life to another goal and I would argue he’s helping a whole lot more people at this phase of his life than he was when he was a lawyer. Nothing against lawyers if any of you are lawyers.

Christine Ratliff: Right. I absolutely love reading the Shepherd Center magazine, the spinal column because there’s so many stories like that about people. You know, the high school students that become quadriplegic and the way that they go on with their lives is just unbelievable.

Ben Thrower: Yeah. And one thing I’ve learned too is, again, it sounds like a cliché but people’s happiness really does not have – is not totally wrapped up in their physical abilities. We see people who have quite a bit of physical disability who are extremely happy.

We see people with very little physical disability who are very unhappy and so I think that there’s obviously a lot more to wellness and happiness than just that external physical ability.

Christine Ratliff: Right. Right. I think we’re about out of time so, Ben, if you’d like to maybe share a closing thought with everyone I think they’d probably appreciate a word of wisdom.

Ben Thrower: I just appreciate everyone being here and to kind of bring it back to the reason Chris had set this up, that wellness focus. We talked a lot about different medications.

We know that, you know, the main medicines we use right now are injections and we’re asking a lot of people to do an injection regularly and possibly not hope to get better but just stabilize with it.

The trade-off though is if you can improve your daily life through symptom management to wellness whether that’s getting your energy levels up, it makes taking those medicines a whole lot easier.

We see that every day that, you know, people’s ability to stick to that injectable drug is a lot easier if they have something else that’s actually improving their quality of life at that moment.

So I would just encourage people to be proactive and look at what’s going on in your life with your MS and look at what takes away from y our quality of life and look at what your options are outside of medication to help manage that.

Christine Ratliff: Oh, Dr. Ben, thank you so much for speaking with everyone tonight. You’ve been wonderful as always. I’d like to thank everyone for joining us and, Matthew, thank you very much. You did a great job.

Operator: Thank you.

Christine Ratliff: And if anyone had additional questions as I said you can call or you can email me. That’s Chris@MSFOCUS.org or call the MSF at 888-673-6287. And finally I’d like to say thank you to Berlex for the educational grant for National MS Educational and Awareness Month. Good night everyone and thank you very much.

Ben Thrower: Good night.

Operator: This concludes Living Well with MS conference call. You may now disconnect.

END

1-888-673-6287 * Multiple Sclerosis Foundation * www.msfocus.org

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