I have 2 neurologists. One is a straight neurologist who diagnosed me 18+ years ago and has been with me since. The other is a multiple sclerosis specialist in New York City who I’ve been seeing for about 2-3 years now. Both of them work on different aspects of my MS. My neurologist is usually the symptoms manager. He prescribes the daily drugs I take. The specialist deals with which MS drug I’m on. The blood work, MRI scans and those things. Why I have 2? I’m comfortable with my neurologist he’s been with me for so long. He’s a big part of my journey thus far. However, he doesn’t except my insurance which is a problem but mostly as I got worse he wanted a second opinion of people who deal with MS daily. He knew I needed one of the stronger Meds but wanted me under a specialist guidance. Therefore I have 2 and I just recently saw both of them.
My neurologist was first. I was having a bad MS day. My biggest complaint has been my arms and hands. My legs have been bad for many years now. I’m used to the numbness, the gait difficulty, the foot drop on both feet, the weakness and constant struggle to move around. My arms and hands have been increasingly getting worse. I exercise every morning still and usually judge my MS by how I feel working out. I’m constantly comparing what I use to do last year, month, week against what I’m doing now. Since I’ve been doing these workouts for so many years, they are good judging points for me when things aren’t right. When I saw my neurologist that day, things were definitely not “right”. His exam actually saw the numbness in the hands. As usual, the weakness in my shoulders, having them over my head for any prolonged period of time, was not evident. This is a constant issue I’ve noticed with my workouts now. My arms can’t do it anymore. They’ve been fatiguing very fast but because I’m not exercise in a doctor check up, this symptom is never seen. His exam showed the typical weakness, numbness and gait issues in the legs. In his eyes, things weren’t “stable” as I’ve been stating for a few months now.
i just went to the specialist the other day. It was a good MS day. One big difference is there her test are tracked with time and measurements. The hands, in her test, showed minimal worsening. The weakness in my shoulder showed nothing. Again, since this has been my newest challenge it’s a very frustrating fact both doctors never see. The greatest thing was the timed walk. I walked 7 seconds faster than I have ever walked in that office. 7 seconds is a tremendous amount. She put that number in this perspective for me. I’m taking biotin,as mentioned in another of my blogs. https://multipleexperiences.org/2016/10/24/high-dose-biotin-with-progressive-ms-a-patients-review/ If in the clinical trial, I maintained a 7 second improvement in my walking ability, that would be listed as a positive outcome of biotin improving MS conditions in secondary progressive patients. The key word there is maintained.
This is where it all gets interesting. The questions: is it the biotin that helped with the walking? Is it the physical therapy that I also just started doing, is that what is making a difference? Could it be the rituxan that has now had a 3 month run in my system? Was this just a good day I was having? Could it have been the fact that I finally went back to my other walker which is sturdier and heavier and I just felt so much safer when I was walking? Is it a combination of these things? Is it all of these? The next visit will hopefully shed some light on answering some of these questions. What I can say is I’ve been so focused on the things going wrong in my shoulders and hands that I never paid attention to the legs. I’ve noticed all the times that have been bad with the legs. The falls, the difficulties and the weakness have been all I’ve noticed. Maybe there has been something I’m overlooking, maybe it really just came down to a good day. Only time will tell but I need to stop focusing on the negative and look at the positive that is what I’m taking away from this.