Right after my MS diagnosis I started seeing ads in the newspaper, as well as getting a constant stream of mailers from the NMSS, about programs for either new drugs that were coming on the market or new ways to deal with the effects of Multiple Sclerosis at some of the nicer restaurants around town. And until recently I just ignored these ads and flyers just figuring that it was too much of a bother to attend because I always thought that I had something better to do. And now, I have to admit, that was a huge mistake on my part.
It wasn’t until recently, when I decided to change medications because I’m sick of the constant injections that I decided to go to one of these presentations given by one of the drug companies. I’m not going to mention the drug here because I wasn’t that impressed with the findings of the drug itself, which in itself is a big deal, but I was impressed by how much information was given into new research that we are reading about almost as it’s happening on studies being released on the internet.
Why this surprised me, was because I have had several conversations with whatever Neurologist I was seeing at the time, only to have my questions answered with something along these lines, I hadn’t heard of that, or I’ll have to go look that up and get back to you. It seems that there is quite a difference between a regular Neurologist and a nurse or Doctor that specializes in the treatment of just Multiple Sclerosis. And this is probably not much of a revelation to many of you that have been doing battle with this disease for decades but it was a new awakening for me.
I have now been to a couple of programs where speakers are actually able to answer, or at least give an educated guess, to my questions without the blank stare that I have encountered in the past from those individuals that I thought would know. And I encourage anyone who is making the same mistake that I have been making for the last fifteen years to go and attend a few of these programs as it is very enlightening and offers more hope for a future free from MS then you might imagine. Even if you are satisfied with the medication that you are currently taking you still should attend these programs.
And besides, how can you turn down a free dinner or lunch at a nice restaurant that you probably can’t afford anyway. And yes, it’s also nice to talk to other people who understand and know exactly how you feel when it comes to dealing with this disease and all of the diverse challenges that come along with it!
Don’t be like I was, get up, get out, and go!
Many know and feel that Multiple Sclerosis is a mechanical issue that cannot be solely rectified by drug, treatment, or therapy !
Yes, that’s an opinion, that is being studied. However, that isn’t a fact yet!
I met my MS specialist by attending an EMD Serono sponsored luncheon. Margaret Burnett, M.D., who directs both the Rancho de Los Amigos Rehab Hospital MS Center and the Keck Hospital of USC MS Center became my specialist shortly after I met her at a local event. I have to travel over four hours round trip to see her, but it is well worth it. With multiple sclerosis research and treatment so rapidly evolving, I think it is a mistake for anyone with a definite diagnosis to go without at least one consultation with an MS specialist. These are the people who are actually conducting the trials in a number of areas, including stem cell therapy. In fact, USC has a dedicated stem cell research and treatment program, dedicated specifically to neurological disorders. You can’t get access to comprehensive care from a private practice general neurologist who treats a broad patient population. Food for thought.
Thank you Shanna for your thoughts. I have seen both Neurologists well as Doctors of Neurology who specialize in MS. And I agree that everyone should do as you have stated!