Managing the disease

May 30th, 2008 · No Comments

Nearly all people (97 percent) with multiple sclerosis (MS) who have started treatment say their commitment to managing their disease in every way possible is their prime motivation for staying on therapy, according to a new North American survey of people with MS, results of which were released today at the Consortium of Multiple Sclerosis Centers annual meeting in Denver.

From the folks I have talked to, MS is a disease of managing. Taking care of yourself by following up with doctors and such. I can manage the disease. I like managing. For that reason, I have two appointments with Neurologists. I have called the insurance company to find out benefits. I have requested information from the National MS Society. I have purchased books on MS. I have googled up the ying yang about the different injectables. I have read every forum post on treatment options. I have read the studies to make sure I am getting the same protection from all the medications. I am managing it.

According to Ross, newly diagnosed patients first must accept the fact that they have a chronic illness that requires life-long care. For many, anxieties about treatment can be overcome by the desire to limit the impact of their condition, and by understanding that early, effective and consistent treatment may positively affect the course of their disease. In fact, more than two-thirds of respondents in the survey agreed, “I would have started treatment earlier (after my first attack, even before official diagnosis) if I had known that it would better decrease the risk of disability.1 But, Ross added, many patients require ongoing support in order to maintain that commitment.

Acceptance. What does it mean to accept this? I don’t want to ACCEPT this but I wasn’t really given a choice. I have a disease that needs to be managed OUT of my life. In order to do that, I need to roll with the idea that I accept it. Don’t tell me that I am coping well because really, how do you know if I am? My humor is part of the coping I admit. When I was first made fun of my eye patch, I went to Archie McPhee’s and purchased an assortment of pirate gear. Not because I wanted people to laugh at me but because I wanted to laugh at the disease. I mean seriously, what kind of retarded disease makes you blind in a day? Seriously. That is some kind of funny no doubt.

In the recent survey, patients cited various injection-related issues as being significant barriers to their committing to therapy. Four in 10 patients (41 percent) named at least one injection side effect as an extremely or very strong barrier keeping them from staying on medication, such as skin reactions (14 percent) and lumps in the skin (10 percent).

Shocking. You mean young people living normal lives and then suddenly uprooted by MS don’t want side effects related to the treatment? Well, color me shocked. First off, these medications are the treatment. There are no pills. Just injections. The side effects which are most commonly reported with these medications included: Flu like symptoms, injection site issues, and racing heart/panic attacks. Since the average age of diagnoses for MS is 30, do you think the average 30 year old wants to feel like death weekly from the flu symptoms? I think not.

I of course will be taking the injection but am I concerned about what will happen if I do have side effects? Heck Yes! There are limited options so I better be able to handle one of them! Since the injections do an excellent job of slowing the progression, it is essential that can handle these injections.