Exclusive Content

Oh my, this is a question and such a conundrum that I have continued to wrestle with myself and my neurology team. I am 56, will be 57 in February 2023.

I have been on eight different DMTs since I was diagnosed in 2001. None of them have worked. Some of them have even caused other health issues that have become chronic. I have had tearful meetings with my neurologist over the years, yet nothing has been recognized as a problem, nor acknowledged as troublesome. I can’t accept this, can you?

When these issues creep up (and they do), they can take over, often robbing us of our lives and daily plans. I struggle, yet the struggle becomes a fight sometimes. I have become locked into the fight, defiant of whatever the thing is of which I can’t define, so I sometimes give in. Sometimes I fight. Sometimes I accept. It’s a struggle, and it’s a now become conundrum. 

What I do know is I’m still here. I’m still functioning and I’m not at all powerless. The only question I continue to ask myself is should I try another medication or not. Sigh. I do not know. After eight failed meds, I deserve to be wary, don’t you think?

I’m a research fanatic and recently found a report by Dr. John Corboy, with the Rocky Mountain MS Center in Colorado. Take a look at the details laid out in the DISCO and CMSC trials and findings. 

I have not had any relapses (that I’m aware of) for the last several years. Yes, I have been progressing, but that’s because the old lesions remain within us as scar tissue. When we age, scars react, causing progressive problems as well. 

I also have other health issues. Inflammatory bowel disease is only one of which has taken over my life – Even more than MS has. Therefore, this adds to my world of meds and trying to figure out what is most important. The conundrum is, I don’t know what to do.

In regards to MS drugs (to quit or not to quit), there is a study by Dr. Corboy and his colleagues which contained 259 participants. 128 continued treatment while 131 did not. The average age was 63. To make a long story short, “discontinuation was not proven inferior and not proven not inferior.” Therefore, the analytics can’t be clear as to quit or not to quit. I do realize there are risks going off or staying off meds. However I also realize I have had horrible problems with all the other meds I’ve tried since 2001. I have discussed my situation with my MS neurology team at UTSW in Dallas. We have been considering my conundrum about continuing with a DMT and am soon to have my annual MRI to see if I am stable or not. We have decided my MRI results will likely be the deciding factor with regard to looking into continuation of DMTs. So, I’m not saying yes or no at this point. We shall see.

According to the CMSC, there are two other trials underway. One focuses on inactive secondary progressive MS, and the other focuses on relapsing onset MS of the disease. I shall wait and see. I accept where I am, what I’m able to do and how lucky I am to be in this place with MS, but I also continue to research, to look into the future and will not give up, not yet.