MS Clinician Digest
MS CLINICIAN DIGEST: POSTINGS BY MEDICAL EXPERTS
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What Do Relapses Mean to Me?
- Published on Wednesday, 29 June 2016 08:20
by: Megan R. Weigel, DNP, ARNP-c, MSCN
President International Organization of MS Nurses
Nurse Practitioner, Baptist Neurology, Jacksonville, FL
June 29, 2016
Relapsing-remitting Multiple Sclerosis (RRMS) is the most common type of MS, occurring in about 85% of individuals diagnosed with the disease. In the early stages of the disease, most people living with MS will return to baseline, with stability between relapses. As the disease progresses with time, however, disability may accrue. The approximate cost of one relapse for a person on a disease modifying therapy (DMT), including costs to a patient for medical care, lost wages, intangible items, and costs to the insurance company, is estimated to be between $10,000 and $24,000 depending on the severity of the relapse. More frequent relapses are associated with higher costs and increased caregiver burden. Relapses are unpredictable and cause significant anxiety, even if your disease is in remission. If you are living with MS, how do you know if you are having a relapse or a bad day? How are relapses treated? Even though they seem important from a financial and quality of life standpoint, do they matter in the long run?
Definition of Relapse (also known as flare, exacerbation)
A relapse is a new neurological symptom associated with MS, or significant/noticeable recurrence of an old MS symptom, that lasts longer than 24-48 hours, occurs 30 days or longer from your last relapse, and is not associated with other factors such as infection, fatigue, heat-exposure, stress, or other medical conditions. Symptoms from relapses will last about 6-8 weeks if untreated.
MRI and MS
- Published on Sunday, 19 June 2016 18:47
Ask the MS Clinician - Learn about MRI and MS
written by: Scott L. Gold, MD - June 12, 2016
The topic of this discussion is MRI - Magnetic Resonance Imaging - what is
it, how does it work, and how does it help in the diagnosis and
management of multiple sclerosis.
MRI is an unique technique for imaging or viewing the human body, looking
for evidence of disease. The history dates back to 1882, when Nikola Tesla
made basic discoveries in physics that enabled us to understand the basic
principles upon which MRI were developed. Our understanding was
advanced in 1937 by Isidor Rabi - professor at Columbia University. In the
early 1970’s, Dr. Raymond Damadian at Downstate Medical Center, built
the first MRI device and used it to differentiate cancer from normal tissue.
His patent in 1974 started an explosion of MRI machines built throughout
the world - 12 machines in the 1980’s and currently 36,000 (45% in the
US). By 1982, MS plaques were first imaged and MRI was on its way to
revolutionizing the way we view and treat MS.
Video Interview on Injectable MS Treatment Medications
- Published on Wednesday, 13 January 2016 14:46
James Shafer, MD - discusses the various Injectable therapies for Multiple Sclerosis
Video Interview on The Oral MS Treatment Medications
- Published on Wednesday, 13 January 2016 14:22
Megan R. Weigel, DNP, ARNP-c, MSCN - answers questions regarding current Oral MS medications
Video was recorded on December 15, 2015
Video Interview on MS Treatments now versus 20 years ago
- Published on Monday, 28 December 2015 17:20
Listen to this interview with Brian Steingo, MD - Neurology
Video Recorded on November 15, 2015
Video interviews on MS Infusion Therapies and MS Relapse
- Published on Thursday, 19 November 2015 21:31
Ask the MS Clinician Digest video series - Part I and Part II
Recorded on September 26, 2015
Watch these video interviews by clicking each topic name
Topic: Learning about MS Relapse
Please comment on either or both of these video interviews
Ask the MS Clinician - September 2015
- Published on Thursday, 24 September 2015 23:25
Ask the Clinician - September 2015
Written by Patricia Pagnotta, MSN, ARNP, MSCN, CNRN
(3) Questions are answered here:
1) What MS treatment is best for me? The shortest answer to this question is the one which controls relapses, MRI activity, disability, and is one you can take. We are faced with a good challenge in prescribing medications for patients now, we now have 13 options for treating MS. We have the earliest therapies which are referred to as platform medications. All of these therapies require an injection, usually given by the individual with MS. The side effect profile of these medication is very well known, but they can cause side effects and all, Betaseron, Avonex, Rebif, Extavia, Plegridy, but Copaxone and Glatopa do require laboratory test for monitoring. Injection site reactions and flu like reactions are the most common side effects of these medications. Beyond the self injections, platform medications, are the oral drugs, Gilenya, Aubagio, and Tecfidera. These are taken by mouth and all require monitoring for side effects. There are infusions, Tysabri, Lemtrada, and Novantrone. Frequency of infusion range from once a month to annually. The potential side effects of these medications are more than the self injecting medications. There are choices the best drug controls relapses, MRI activity, disability, and is one you can take.
Living with MS and Planning for a Family: Women’s Concerns
- Published on Sunday, 12 July 2015 21:15
Written by: Megan Weigel, DNP, ARNP-c, MSCN * Date: 7/12/2015
Living with Multiple Sclerosis (MS) can cause feelings of uncertainty, anxiety, and even fear to arise when the discussion of family planning is brought to the table. The purpose of this article is to offer some practical advice about issues surrounding pregnancy for women living with MS.
First of all, MS has no effect on pregnancy itself. Rather, pregnancy is beneficial for most women with MS because it shifts the immune system into an anti-inflammatory state. In fact, according to one study, relapse rates fell by 70% during the third trimester. Many women ask about the high risk of relapse after pregnancy. While the relapse rate in the first 3 months after delivery rises by 70% above pre-pregnancy level, only about 30% of women will relapse during this period. A woman may have less of a chance of relapse in this time period if she had been on disease modifying therapy (DMT) prior to becoming pregnant, and if she had a lower incidence of disease activity.
It is important to note that most MS specialists would not recommend staying on DMT while trying to become pregnant or during pregnancy. Each DMT has a different “wash-out” period. If you and your partner are planning a family, your timeline should be discussed with your MS specialist as soon as possible.
When the Caregiver Needs Care
- Published on Friday, 10 July 2015 17:28
By Cherie C. Binns RN BS MSCN - July 6, 2015
A recent turn of events has taken place that has me questioning how we can best support our Community when one of those caring for us begins to need a role reversal and we end up caring for them. My mother cared for my Dad for years as he valiantly and fiercely fought his battle with cancer. During that time, she let her own health needs slip and dental care went undone as did visits to her own doctor. A year ago, when my Dad was admitted to Hospice, the nurses wisely took a good long look at the Caregiver and were appalled to note that she was even more ill than he with severe Congestive Heart Failure and evidence of a heart attack in the somewhat recent past. She recalls the night that it probably happened. “Your Dad had had an awful day with his catheter not draining and pain not managed well and when he finally fell asleep, I noticed a searing pain in my back and trouble swallowing. I was ready to go. I was so tired and prayed that God would take me if it was His will.” She relates she woke the next morning without the pain but spent more than a week having difficulty tending to his needs due to shortness of breath and fatigue.**
MS: Then and Now
- Published on Thursday, 26 June 2014 22:19
By Cherie C. Binns RN BS MSCN
I have been a nurse since the early 1970s. In one of my Medical/Surgical nursing courses, I vaguely remember hearing about neuromuscular diseases such as MS, MD and ALS and the special nursing care needs these patients presented. I even saw a few of them in clinical settings prior to graduation. However, it was not until 1992 when I became a Home Care Case Manager, that I really began to understand the implications of untreated MS that had run its course!
Rehab My Way Exercises
- Published on Monday, 09 June 2014 19:00
Rehab My Way Exercises
By Cherie C. Binns RN BS MSCN
Updated June 2014
As with any exercise routine, remember to breathe fully and normally so your muscles are getting needed oxygen as they move in ways that may be foreign to them. If fatigue or heat intolerance are a factor, DO NOT focus on repetitions. Work an area till it is fatigued or stops working easily then move to another muscle group.
Rule of thumb: stretches should be held 30-30 seconds and strengthening moves 3-6 seconds.
- Sit on seat in spa and move with the water by circling arms and legs, rolling ankles and shoulders, neck side to side in slow gentle motions.
- Pull-ups on the two safety rails at right angles to my seat.
- Hamstring stretches. Legs in a ‘V” as broadly stretched as possible, toes pointed, lean over one for 20-30 seconds and then the other.
- Glut (butt) stretch: Rest ankle on opposite knee. Push down on knee of top leg while gently lifting ankle with other knee till you feel a stretch across the buttocks. Hold 20-30 seconds and repeat on the other side.
- Torso stretch: While holding the safety rails, keep upper body straight and twist at waist with upper leg bent towards chest and lower leg extended fully and slightly behind the body. Start out with one to each side and slowly add more as your body accommodates.
- Quad stretch: Pull foot behind body, grab ankle and apply pressure toward back till a solid stretch is felt in upper thigh. Hold 20-30 seconds. Repeat on other side. Start out with one per leg and advance as tolerated.
- Calf Stretch: With one leg extended behind you and foot flat on floor of pool, lean forward till the entire lower leg feels stretched. Hold 20-30 seconds and repeat on other leg. Start with one per leg and work up as tolerated.
- Sit with back flat against the side of the pool, knees bent. Pilates band with handles is through the lower arm of the safety rail. Keeping arms straight, pull arms to just behind and beside waist and hold stretch for 20 seconds. Release and repeat. After your targeted number of these (3-5 at the beginning) turn your hand over and repeat the exercise. It works the muscles on the opposite side of the arm.
- Sit on a bench under water sideways to the pool wall. Take about 18-22” of tubing with a handle on the end and hold it under your hand on the safety rail. Place the foot of your outside leg in the hand hold and move leg sideways as far as you can , keeping knee straight. Hold 20-30 seconds, repeat until you have met your target stretches (start with 2 or three work up as tolerated.) Turn body 90 degrees so you are near the other safety rail with the other leg on the outside and repeat this exercise on the remaining leg.
- Pilates tubing or exercise bands can be wrapped around calves or thighs and resistance placed on muscles by spreading legs as you maintain the tension. Hold each move for at least 10-15 seconds. Remember not to overdo when you start. Add one or two or even 5 (but no more) reps every few days as you become comfortable with the routine.
- Face down , cradle your head and face on folded arms on the highest seat or edge of pool and flutter kick for several seconds to several minutes.
- Sit securely in one of the corner seats in the pool and flutter kick or bicycle for several seconds to several minutes.
Be sure to drink a full 8 ounces of water for every 10 minutes of exercise to replenish lost fluid and flush the system of toxins released as you have exercised. This intake should be in the hour following your routine.
In the summer when it is over 75 degrees outside or in the room in which I am working, I keep the water in the spa set between 83 and 86 degrees. In the winter when the room temperature is in the 50s or 60s, the water temperature is kept between 90 and 92. Remember, the benefit of working out in the water with MS is that it does not raise your core temperature, thereby causing MS symptoms to worsen. You can work longer and harder without becoming over heated. And the use of Pilates tubing or Exercise bands for resistance helps to build muscle strength in the water where weights would be less effective.
Rehab My Way
- Published on Monday, 09 June 2014 18:53
By Cherie C. Binns, RN, BS, MSCN
Originally written in February 2008. Reviewed and edited June 2014
On August 20, 2005, I went to my grandson’s second birthday party, just down the street from where we live. I was carrying items to go on the grill for the day’s festivities. When I arrived, Heather (my daughter) had a baby gate over the entrance to back yard to keep the 9 toddlers invited to the party contained and safe. I made a split second decision to step over the barrier and into the yard rather than move it aside and walk through. Except, my left foot (the one with foot drop) was not cooperating. It caught on the top of the baby gate, I hopped forward on the right foot to clear it and when it did come clear, hit the ground on the top of the instep, effectively bending the foot in half and breaking all of the long bones of that foot.
David arrived from late appointments a couple of hours later and took me to the ER for X-Rays. This was a Saturday evening. On Monday morning, we met with the orthopedist who informed us that I’d essentially broken the foot in half and would be in a cast for 6-8 weeks. He then decided that since I’d already started to develop a pressure ulcer from two days in a temporary cast and did not even sense localized discomfort, it might not be the best idea to put a cast on the foot so a boot was decided on instead….and a walker. Whoa! Was I ever a klutz! I asked about weight bearing. The PA said none for at least two weeks. The ortho, on the other hand told me to let pain be my guide. “Walk on it as you can tolerate”. He knew when he said that that I’d had reduced sensation in that foot for years from the MS. In retrospect, he saw that the weight bearing had prevented the fractures from healing and had caused those that were properly aligned at the time of injury to shift in some areas.
When Life Gets in The Way
- Published on Sunday, 24 March 2013 19:50
When Life Gets in the Way
By Cherie C. Binns RN BS MSCN
I have not written much here in the past few months because life has gotten in the way of some of the creativity that has led to this series of articles. By saying that, I am also saying that Multiple Sclerosis (MS) has been behaving for some time now freeing me to live life more on my terms and with a broader spectrum than in previous months and years.
If you have been following my writings posted on www.msviewsandnews.org under the “Ask the MS Nurse” link, you know that 2008 was a year that saw me in what looked to be more than a year long slide into progression of disability. This, it turned out, was a result of a Urinary Tract Infection (UTI) that was not responding to traditional treatment. Why? Well…it was discovered that my DMT (Disease Modifying Therapy) was doing such a good job of modifying my immune system so that I could survive an MS relapse, that I did not have the antibodies to fight a real infection elsewhere in my body.
Once the Immunologist had determined this to be the cause of my not being able to fight a simple infection, I was taken off my DMT and placed on a daily dose of IVIg (an intravenous infusion of antibodies from multiple blood donors) for a week. That enabled me to fight the infection and a week later, for the first time in 16 months; I had a clean urine culture. Back on my DMT, I developed another UTI within two weeks so had to come off my traditional therapy and look for another alternative to get and keep me well.
You can read about this journey in “Why my relapse was not a relapse…” posted on June 22, 2011, and “Cytoxan as an MS Therapy” posted on July 18, 2010 at this link: http://www.msviewsandnews.org/index.php?option=com_content&view=category&layout=blog&id=47&Itemid=92
The long and the short of it is, that after 25 months on high dose , high frequency Cytoxan therapy, it took nearly a year for my immune system to show evidence that it was beginning to rebound to “normal levels”. During that time, I felt better and better to the point that I was telling everyone who asked that I was “better than at any time in the past 25 years!”. Feeling so much better led to doing so much better and putting actions into the words that I was speaking.
I returned to work for the first time in 12 years. My “work” was something I had never done before. I began to work in the Real Estate Office where my husband is an Agent managing Transaction files for the Agents. This allowed me to get through a summer in an Air Conditioned office and I continued to feel better and be more productive. Life was getting in the way of my MS defining who I was and what I could do!
Unfortunately, a month later, life got even bolder when my dad took a tumble and broke his hip leading to the discovery that a cancer he thought gone 5 years before had, in fact, spread to his bones and other areas of his body. So…with a new job, I began making the 950 mile round trips monthly to take my Dad to the Oncologist and helping set up a plan of care and educating family on how to make the most of their visits to the members of their health care team. Dad has responded to therapy and the “Team” is functioning well and I am only making the trip every few months now instead of monthly.
And work in the Real Estate Office has built. I am now in my SSDI trial Back to work period and surviving it. We are even making plans for a vacation that will include Disney in a couple of months. Previously, that has always meant a wheel chair or scooter and my husband is excited that I am living so well now that that does not look like it will be needed.
And yet, if I am honest with myself, life has gotten in the way (in a good way) of my living with MS at the center of it all. Still MS is in the picture and reminds me (sometimes daily and sometimes at infrequent intervals) that it is still there. When fatigue kicks in from an especially busy day at work or a 7 hour trip to visit my family, my balance is not great. Vision is no longer crisp or bright. Bladder doesn’t empty as easily or fully as it normally does. I wake during the night with hip pain telling me that spasticity is once again entering the fray.
It is time for me to listen again to what my body needs and consider modifying my exercise regimen or possibly going on another DMT. I am currently on no medication since my Doc has voiced that the long term treatment of Cytoxan may have made it possible to remain off medication for the rest of my life. That may, in an ideal world, be true but this may not be an ideal world and, frankly, I like it when Life Gets in the Way of my MS. So…I will do what I need to in order to continue to let Life Get in the Way!
Written for MS Views and News
March 24, 2013
Aging With MS
- Published on Wednesday, 20 June 2012 12:26
By Cherie C. Binns RN BS MSCN
Last week, I had the opportunity to participate in a Town Hall Discussion on Aging in Multiple Sclerosis presented by the IOMSN (International Organization of Multiple Sclerosis Nurses). Marijean Buhse, PhD RN NP MSCN was the featured speaker. As a Nursing Researcher and faculty member at Stonybrook School of Nursing on Long Island, she has spent several years observing aging patterns in the MS patient. I will provide a link at the end of this article so that those who wish may listen to her presentation on Podcast.
One of the things that she said that really struck me was that most of us living with MS, will live with the condition for more than 50 years before we die. She said that at least 90% of us will live a lifespan that meets or exceeds that of our age group in general. HOWEVER, those of us with a Chronic illness such as MS or Lupus or RA are only now being looked at as Aged NOT at age 65 or 70 but starting as early as 55 because of the long term strain on our bodies from having a chronic illness and also from the aging of the kidney or liver from processing the symptom management and disease modifying treatments to improve our quality of life. For us, this may mean Drugs are not metabolized as safely or efficiently and we may need lower dosing or avoidance of certain substances altogether.
From data bases available to us, Dr. Buhse stated that in 1964, 9% of people with MS (PWMS) were over the age of 65. As of 2010, 25% of us are now over the age of 65. At this point in our lives, we tend to have more visual deficits, cognitive issues, bladder problems (especially for women) , slowing of the GI tract and co-morbidities such as high blood pressure, diabetes, elevated cholesterol than our non-MS counterparts.
We often have fewer friends because as our activity level changes we may no longer be included in the theater or golfing or dinner groups that once were a part of our lives. Accessibility may be an issue to doing things we enjoy, so the friends we enjoyed those activities with often fall away and contact is minimized, if not lost altogether. Also at this age, all of us have friends who have been lost to heart attacks, cancer, accidents. As a result we tend to be lonelier and that often will lead to depression.
In her presentation, she discussed side effects of medications to manage spasticity, cognition, constipation, depression, bladder problems and how all seem to pile atop each other to magnify side effects. Therefore her recommendation is to start low on dose of any new medication and go slowly when increasing dosing. She also is a great proponent of using the least expensive medication to treat a problem in this group of patients as there are generally so many medications being utilized that cost is prohibitive, especially in patients receiving Medicare Drug coverage. This is especially true if one is on a DMT (Disease Modifying Therapy) which can cost thousands of dollars each month.
What surprised her when she began working with this age group of PWMS was that only 40% were on a DMT. Of the remaining 60%, a majority were told by their neurologists that they could no longer be helped by medication and refused to continue prescribing. In a few instances, insurance companies had denied coverage for DMTs past the age of 65. This is a situation that concerns her greatly and she implored the nursing community audience to act as advocates to keep legislation on the table to provide medication that either the patient or the physician sees as necessary with no age bias. She did say that compliance with taking the DMT was at or near 100% in this older group versus about 60% in the 30-40 age range group. Her theory was stated as (paraphrased) the older person with MS knows what a relapse can do to their quality of life and will do anything in their power to avoid one. They’ve been there!
One other point she emphasized was the importance of daily exercise in anyone with MS. “Just Move it!” Do anything that gets you moving and keeps you moving. And she stressed that smoking is the single greatest common factor in decline in Multiple Sclerosis and urged all of us to stress that our patients have stop smoking programs and support offered as a primary treatment as they move toward wellness with Multiple Sclerosis.
To listen to the Podcast of her talk and the nursing discussion that followed, go to this link
For articles written by Dr. Buhse, here are links you may use:
Written for MS Views and News June 20, 2012
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