“MS is a whole different disease now,” said Dr. P., an MS specialist and my new neurologist, when I met her this past August.
What ever did she mean?
I arrived at her clinic in a wheelchair, and honestly, I felt like a novelty. I got the distinct impression that people with MS are no longer in wheelchairs. It seems there are fewer of those like me, who fell through the cracks because there were no medications available for multiple sclerosis when we were diagnosed.
My new specialist told me that today, neurologists try to get to patients with MS very early on, so they can be medicated and never reach my stage of MS, which is secondary-progressive MS.
As involved as I have become over the years in all things MS, this attitude, which was new to me, gives me renewed hope and cautious optimism.
‘Comfortable Maintenance’ Is Now the Goal for MS Management
At the moment, a cure is nowhere in sight — for anyone — but comfortable maintenance is.
In my case, however, too much damage has already been done, especially to my cerebellum. I have looked at my MRIs, and there is so much MS present in the cerebellum, brain stem, and the spinal cord. Dr. P. calls this “just too much MS.” In all my years, I have never heard MS being described this way, almost like a nuisance.
What do I mean by comfortable maintenance? This December I will mark 37 years with MS and everything that goes with this thief that attacks its host indiscriminately without compassion. So what does one do under these circumstances?
After meeting Dr. P., I don’t feel like a sitting duck anymore. A cure might be elusive, but things can be done, medically. I will admit, there were some drugs on the market in the 1990s, but given the side effects listed, I always secretly wished that others would be guinea pigs before me. Some did volunteer, and some of those brave pioneers died.
My Instinct Is to Be Careful With New MS Treatments
My old neurologist, Dr. D., is a dear soul, but being a general neurologist, he could assist me only to a point.
Dr. P. is the new generation of MS physicians. But I am careful not to get too caught up in this new enthusiasm.
I have had MS for way too long, and along with this comes wisdom. Just like my former neurologist, the new doctor is enthusiastic and ambitious in her approach. Here I am now, dealing with renewed scientific wonders, but are they right for me? My instincts say to be careful, very careful! At this point, I may no longer be a candidate for comfortable maintenance. Am I just sick and tired of new medications, none of which work very well?
I Still Remember the Work of Roy Swank
I come from the school of Roy Swank, MD, PhD, a neurologist best known for recommending a low-fat diet for people with MS.
Dr. Swank, who was the head of neurology at what is now Oregon Health and Science University, in Portland, treated all his MS patients gently, with respect. He changed many lives through his research on MS, and he is still revered by many of us to this day. You can see and hear the Australian professor George Jelinek, MD — who also promotes dietary and lifestyle changes for MS management — speaking about Swank in this video.
I have realized that Swank and I were unfortunate victims of our timing in life. Swank was born before his time, meaning pre-MRI technology, and at a time when randomized controlled trials did not exist. I was diagnosed too early, meaning before the 1990s, when research in MS was hardly on the medical map. But Dr. Jelinek’s video exhibits how important Swank’s research was.
When I asked, Dr. P. said she had never even heard of Roy Swank!
Why I Continue to Admire Dr. Swank
This is my current thinking: Swank understood MS. More important, he understood people with MS. He was an MS specialist who never got the credit he deserved. All his hard work and studies were never acknowledged because they were not randomized clinical trials. But he followed up on subjects 30 years later and kept meticulous records. Wow! All that informative work!
I come from that special school of thought and less from the one that subscribes to a current list of medications that do not cure and are riddled with side effects, meant to prevent future disability at any cost. Of course, Swank did not like progression of disability, but he handled things without killing a mosquito with a cannonball; in other words, he had a more gentle approach.
My Treatment Decisions Are Only for Myself
I see the logic in this, and it appeals to me more. Why? Maybe because I have advanced MS, and I choose only to take my disease-modifying therapy without other medications that may or may not be helpful to me.
Of course, this is my opinion. Others may and certainly have done things differently. One woman in my MS support group confidently tells me that if she had taken my approach, she would be exactly like me, meaning in a wheelchair at extended disability status scale (EDSS) 7, as opposed to where she is, at EDSS 5, ambulating with a cane.
My cerebellum may look like Swiss cheese after recurrent immune attacks, but I take pride in how far I have come. I am not giving up, just embracing my approach to life with MS.