I’m a patient, have been one for years and I have had a lot of time to think about and reflect on experiences that I have had. Through college I ended up in the emergency room two times, the first time I was diagnosed with and treated for a stroke (ischemic aka ‘clot’ stroke not a hemorrhage). Almost exactly two years later I was in the emergency room because I was sure I was having a stroke, the symptoms felt the same in that half of my body was difficult to move or feel anything. The only difference in my experience when walking in the second time was that it was the right, and not left, side of my body (with the stroke I lost use of my left side). This time I was diagnosed with multiple sclerosis (MS).
Now, almost ten years since the second trip to the emergency room which was at NYU Medical Center and after meeting hundreds of other moms who have multiple sclerosis as well as people who aren’t moms of course I have really noticed that the way we as MS patients get treated after a relapse is extremely different than after a stroke, despite the experience and honestly as a layperson the look of the MRI scans, being virtually the same.
When I had my stroke, I was 18 years old, and I was treated as if this was a very serious occurrence and urgency in getting physical therapy so that I could again walk was communicated very effectively. I went through months of intense physical and occupational therapy and was just about back to my normal 18 year old self (aside from frequent trips to the hospital to get my protime tested from being on coumadin).
When I had my attack, or exacerbation as they call them in MS lingo, it was not like this. At the time I was diagnosed I was introduced to the first drug I was put on and quickly sent off to learn how to give myself an intramuscular injection once a week. No physical therapy was even discussed, most of the discussion included advice to not go online and do research because the information out there, and in books was scary, and that wouldn’t help me.
Obviously I didn’t follow those instructions or else I wouldn’t have discovered the need for a site dedicated especially to mothers diagnosed with MS and met all the wonderful women I have been fortunate enough to meet over the last year.
I have done a lot of research, and I have not limited the scope of this research to the diagnosis of multiple sclerosis. Of particular interest were the books about the neuroplasticity of our brains, and that even after we are fully developed, we are actively creating new connections in our brain (axons) to accommodate what we are learning physically and mentally. Again I’m not an expert, but as I understand this, and the number of books and websites available when one searches for “neuroplasticity exercises” implies that this is possible, so why not treat patients of multiple sclerosis with an aggressive physical therapy regimen to gain the skills back that they lost?
Too often I meet other MS patients who seem to have accepted the status quo that all we can do is take our meds and ‘hope’ the damage isn’t permanent. I have even met a woman whose doctor discouraged her from pursuing anything like physical therapy and declared that the damage was permanent. Personally if my doctor told me to give up on myself like that he would have gotten an earful if not a lawsuit.
Today I treat my MS with the help of my Neurologist, Naturopath, Massage Therapist, sometimes an Acupuncturist and a Physical Therapist. I wish that this was the standard of care that all MS patients were advised to pursue because I believe that all of these treatments combined with the efforts my husband and I put into eating what our Naturopath recommends.
I have pursued all of this on my own, this is something that all of us patients must to in order to ensure the highest quality of care when we find that we are not being given it without asking. I was able to get a physical therapist prescription when it hurt me to walk, something that was caused from the imbalance that I experienced and that my body adapted to during/after a relapse similar to the one that got me diagnosed with MS. Residual damage from occasionally being unable to use parts of our bodies seems logical, and very treatable based on what I have experienced going to physical therapy.
It is my experiences like this combined with massive amounts of research and interest in modern technology that started me with my Medical Analytics Fantasy which I see as capturing this kind of information and experiences in a much faster and more effective way and delivering it directly to the patient who is in need of the information of others.