Transcription of Dr. Alexandra Degenhardt for the show Multiple Sclerosis: Understanding & Hope, #100
Lisa: As a physician, I’ve spent many years caring for patients who have various acute and chronic diseases and some of the diseases that I find most challenging and difficult to deal with are those that are neurologic in origin that is the diseases of the brain and the nerves and the spinal cord. I’m privileged today to have with me an individual who is spending her life now dealing with these diseases. This is Dr. Alexandra Degenhardt who is a Multiple Sclerosis Specialist and Neurologist at Pen Bay Medical Center. Thank you so much for coming in and talking to us today.
Alexandra: Thanks for inviting me.
Lisa: Neurology is a pretty highly specialized field and it’s something that not all medical students know that they want to go into when they are first going through their process of deciding. What was it about neurology that interested you at first?
Alexandra: I think a lot of people of our generation are drawn to the brain because there have been a lot of discoveries and there are so much to discover so I think it’s an area that does interest a lot of people. Then I just ended up in it because I still found that the most interesting as I went through, but there are so many interesting areas of medicine so it’s the one that captivated me the most.
Lisa: When you’re dealing with patients who have neurologic issues, did you find it challenging at first because it’s not as if they are … if somebody comes in with a broken leg, it’s a broken leg. If somebody comes in with a cough, you can say it’s bronchitis. Neurologic issues are not always straightforward and they’re not always things that can be diagnosed by MRI or a CAT scan or any testing that we have available. How did you deal with that sort of challenge?
Alexandra: I think it’s actually really fun because the … I always viewed it as a primary care physician has to integrate so many different aspects of medicine and they really get a hand-on approach with patients and that’s hard these days. In neurology it’s similar. There are a lot of complex pathways to think about and then you only figure it out by putting your hands on the patient and examining them in detail and that’s much better than an MRI for most things so that I thought was especially fun.
Lisa: That’s an interesting commentary because you’re right, many specialties these days they don’t even feel like you need to put your hands on. It’s an afterthought that’s like, “Well, I’ll touch the patient just so that I can say I touched the patient,” but I know that if you’re testing cranial nerve function or you’re testing reflexes or you’re testing touch sensation, you actually have to put your hands on that patient in front of you and that’s the intimacy with the patient that I think many people feels lacking these days between physician and patient.
Alexandra: Yeah, and I think the reverse is tricking for a lot of physicians. They might miss that as well because you do gain a better understanding of people and their bodies I think when you’ve got your hands on them, so I think it’s nice and then it’s fun too because if you can figure things out that a machine can’t figure out and that’s fun.
Lisa: Yeah, it’s almost like detective work and can be very satisfying detective work.
Alexandra: Yup.
Lisa: Multiple sclerosis, talk to me about that. I know that in our state and in the northern latitudes we actually have an increased incidence of multiple sclerosis. Did that play into your decision to come practice in our state?
Alexandra: Partly especially because I super specialized in … after neurology I spent a lot of time in it so it was nice to be able to find a beautiful place to live that was so interesting and be able to continue my practice so that did play a role so I feel lucky that I was able to carry on working here in that area.
Lisa: For people who are listening who aren’t familiar with multiple sclerosis, tell us what that is. What it means how it’s diagnosed, how people might … what symptoms they might have.
Alexandra: The funny thing about it is it can affect any part of the nervous system in terms of the brain and the spinal cord not the nerves outside of the spine. That really can encompass any sensation, any movement, any experience that a person has. It’s very hard to limit the definition in terms of what someone experiences which also creates a lot of confusion and anxiety because there are a lot of people who do read things about it and then think that they have multiple sclerosis and probably there’ve been many medically trained people as well who think that they have it.
The key thing is that it’s recurrent inflammatory episodes predominantly that does affect these regions of the brain and spinal cord. It doesn’t have to affect all of the regions it just has to affect more than one region and be recurring and that recurring pattern can vary from one every 30 years to every couple weeks so the point there is that it just has to be recurring and so there’s a large variability in what people experience which makes it very frustrating for the person experiencing it, but that’s how it’s defined. Then by exclusion other diseases are ruled out and that’s a combination of a good general exam, a good medical history, and MRI these days.
Often a number of puncture not always, sometimes the MRI is enough and then usually some blood tests as well. When things are ruled out and there’s no other possibility then the diagnosis is given as multiple sclerosis.
Lisa: The types of symptoms that people might have include what?
Alexandra: If we start from the top of our bodies, really there can be headaches for some people but that’s not a predominant symptom. There can be visual changes, blurry vision, pain behind the eyes, double vision. There can be changes in color detection so colors may appear different in one eye compared to the other eye especially reds tend to be affected early on. There can be numbness in the face, pain in the face. There can be slurred speech, trouble moving this face. There can be trouble swallowing.
There can be trouble moving one arm, both arms, one leg, both legs, one arm and one leg on one side. There can be pain so skin sensitivity pain in many areas of the body. There can be bladder dysfunction. There can be memory dysfunction, cognitive dysfunction. It really encompasses so many different symptoms.
Lisa: That sounds like it could be a really frustrating problem for patients and their families to deal with especially if it’s changeable overtime.
Alexandra: It’s incredibly frustrating and that’s one of the hardest things about multiple sclerosis because it pretty much remains frustrating. In the beginning, there’s always this uncertainty. A lot of times if someone has it, a lot of people experience going to multiple physicians before they get diagnosed or even multiple neurologists. Then sometimes it’s a waiting game. Sometimes one episode occurs and that does occur in an isolated phenomenon. Then that’s not called multiple sclerosis but then a lot of people go on to have future episodes if they have this relapsing-remitting type and then they’re given the diagnosis of multiple sclerosis.
Then they play a waiting game so there’s a lot of adjustment. There are very excellent treatments available but it is a difficult waiting game for many people and an adjustment period as well as things that they adjust to overtime different experiences, different medications, and then how people around them adjust because a lot of people see these individuals as looking normal but they are actually not only suffering, but they are going through a lot of turmoil and experiences that are very difficult to go through.
Lisa: For that reason, is it important for patients to have someone like you or another specialist to create a long term relationship with?
Alexandra: That would be the perfect scenario, so luckily most of the time we can develop a long term relationship. For some people, they actually do have to travel quite far in order to see their specialists. Then their primary care physician that they have a long term relationship may take over a lot of that role if they have to travel quite far. Then there are a lot of people who can have a neurologist overtime but as I’m sure you and everyone else knows there is an unfortunate turnover in the medical profession in terms of a lot of people moving, patients move, physicians move and that happens more and more these days so that makes it difficult.
Lisa: It sounds like from what you’re telling me that this field continues to evolve and what we know about multiple sclerosis like what we know about say the neurologic problems associated with Lyme disease or other diseases, we need to have more information on them. We need to keep researching this. We need to be spending money and energy and really understanding all of this.
Alexandra: Definitely and I think in terms of state in Maine, both those issues both Lyme disease and multiple sclerosis, although they’re not linked, it would be great. People tend to move around less here than in many other states. This is too big problem in the state here and it would be great to spend more time researching in here.
Lisa: In some ways, this could provide an interesting and hopeful population of research subjects.
Alexandra: Yup, and hopefully be able to quite quickly get some answers that would help a lot of people.
Lisa: Dr. Degenhardt, you work with people whose lives are impacted by a variety of problems neurologic in really significant ways and over the long term. You’re a young physician and you’re living your own life. What lessons have you learned from your patients?
Alexandra: They’re quite amazing and I think anyone who is in the field who they’re exposed to a lot of people finds meeting so many different people amazing so that it has that aspect to it, but also you’re seeing them when they really put through so many trials and difficult times and you really see the raw nature of human behavior which isn’t always nice. Then again it’s comforting when you see them feel better and get control their lives and enjoy their lives and also you see how well some people deal with these difficult times that probably I don’t think I’d do ask good of a job, but there are many people who do amazing jobs of that.
There are many people who I admire that they’re able to go through this and really they appreciate the simple things in life, which I think is probably a common theme in any area. If we look at it in detail, they enjoy their friends and family. They enjoy the life that they have and they make the best of it and they really enjoy life, so they concentrate more on the good things that they have and I think that’s an amazing talent to be able to have it. I don’t think I have it but I think it’s amazing.
Lisa: Do you enjoy having these long-term relationships with patients? I know you’ve been at Pen Bay for about two years, but do you enjoy being able to see people overtime and become a part of their lives?
Alexandra: Yeah that’s wonderful to be able to see people overtime and it does lend itself to better medical care too because then you know when there’s a change in their exam and you know how they’re going to deal with things and you know what medicines they tend to react poorly to and how they tolerate all these changes and so you can do a much better job.
Lisa: Dr. Degenhardt, how do people find out about the work you’re doing as a Multiple Sclerosis Specialist and Neurologist with Pen Bay Medical Center?
Alexandra: There are a number of different ways and there are a few other people in this state as well who are concentrating on this area. In Portland, there’s a very good MS center here and they have a website to find out more information about them and I can easily be found on the web as well. Our office can be called and the office staff is very friendly and helpful. There is another MS specialist in Waterville and there’s one in Belfast and then there’s a new MS center in Bangor that’s just being developed and they have a website as well. There are a small number if you compare them to other states, but they’re nicely spread out and there are many more now than there were a few years ago so I think that that’s great for the state.
The National MS Society is also getting more and more involved in Maine and that’s wonderful and so they often make their base in Massachusetts but they make a lot of trips up to the region and they try and improve and coordinate some resources. They also are a resource four persons with multiple sclerosis who are trying to find people for example a physical therapist, or a psychologist, or an ophthalmologist, or a neurologist in Maine who has this area of specialty. They’re able to hook people up as well.
Lisa: We’ve been speaking with Dr. Alexandra Degenhardt a Multiple Sclerosis Specialist and Neurologist at Pen Bay Medical Center. As a primary care doctor myself I’m very appreciative of people who are in your field helping me care for the patients in the state of Maine and the work that you’re doing on MS and really thank you for coming down and speaking with us today.
Alexandra: Great, thanks very much.