Dealing with an Unexpected Change with MS

By Matt Cavallo

Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.

I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.

Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.

There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment.  Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?

In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.

During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.

I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.

Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.

With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.

The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog

Share

You and Your Neurologist: One of the Most Important Relationships

By: Meagan Freeman

Finding an excellent Neurologist is one of the first things we need to do after diagnosis with MS. It can be very difficult to choose a random name from a list of covered providers from our insurance companies, and without a solid recommendation from someone we know, we often need to take a “test drive.” Patients and providers are much like any relationship we have in life: Some personalities are a perfect blend, and others will never work together. It is incredibly important to seek out a provider who is not only medically competent, but also a good fit for your personality.

I find that some providers are cold and distant, only seeing patients as a disease process. What about the mind? We are so much more than a body. Providers should always see the patient as a mind-body unit, addressing the full scope of chronic illness. Psychological and emotional symptoms are common, and no one should leave an appointment feeling dismissed.

I am a family nurse practitioner, and we are trained from day one to see the humanistic side of medicine, to view the patient as a whole being, rather than the sum of the parts. The body cannot be healed without addressing the spiritual, emotional aspects of the human being. After being diagnosed with MS, I appreciated this manner of teaching more than ever before.

There is an intricate, indivisible connection between the body and the mind, and treating only one while ignoring the other will never prove effective. There is, what we call in medicine, an “emotional overlay,” to almost every physical issue. Whether this means that the condition is purely psychological, or whether the mind is reacting to a physical issue (anxiety, panic attacks, depression,) the mind must always be taken into consideration when treating every patient.

Our society is very quick to assume that modern medicine has all the answers, a secret book of treatments, available only to those who have attended medical school. This magic book contains all of the recipes for treating illness, and is kept hidden, under lock and key. The providers of the world are assumed to have the ability to fix anything, treat anything, and if they do not offer a fix, they are assumed to be withholding treatment intentionally.

I can tell you, this is not the case. One of the most shocking things I learned while transitioning from a registered nurse to a nurse practitioner was the absolute limitation in options we have as providers. We only have a few things to offer, a few laboratory tests, an x-ray or two, a few medications that may or may not be effective. Most medications also go along with an enormous list of potential side effects that have to be taken into consideration. Many prescription medications are not necessary, and can lead to a variety of new problems. The risk versus the benefit of any treatment needs to be considered. Treating physical illness is not only a science, but also an art; and sometimes, providers simply run out of ideas. Every possible treatment option has been exhausted, and there is simply nothing further to offer. I find that patients are shocked when this is the answer. “What do you mean, there is nothing left to do?” Sometimes, the answer is just that, and we are left trying to cope with our “new normal,” whether it is pain, numbness, weakness, or any other symptom.

When you visit your provider, keep in mind that they may not have an answer for every question you have. Your provider is doing their best, I am sure; but the answer “I do not know,” is an acceptable one sometimes. I always trust providers who admit that they do not have an answer, because this is honesty. If your provider says, “Well, if you really want to take something you can try this…” this is code for- “you really do not need this.” Sometimes, in medicine, less is best. The minimalist approach to treatment is wise, and so many patients have been “overtreated” in recent years. Too many medications, wasteful, unnecessary diagnostic testing, and the resulting side effects and anxiety are major issues in medicine currently. Patients and providers need to take a moment and ask themselves, “Is this really a necessary test or treatment?”

Trust your body to be able to handle most minor issues. Your body is an intricate, well-constructed, dynamic machine that is much wiser than we are as health providers. Now and then, the body might need an extra hand at combating an infection, but not always. Listen to your body! Prevention is the key! Get your immunizations, get some exercise, eat healthy foods, and obviously avoid smoking and alcohol. MS aside, we all need the same basic advice on remaining healthy and living the best life possible.

Questions to Ask Your Provider at Appointments:

1. Do you feel that my disease is well controlled with my current medication?
2. If not, are there other medications available that you would recommend?
3. Do you recommend any other treatments for my current symptoms (alternative or traditional?)
4. How often do you recommend appointments and MRI?
5. Is there any new research that has become available since my last appointment?

Try to develop a relationship with your provider, and if you feel dismissed or ignored, it may be time to consider a change. Like any relationship in life, some people just don’t “click.” But in this case, your health is at stake; so don’t be afraid to find the right fit for you.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Share