Monday, April 14, 2014

Guest Post: Having a Talk with Your Doctor about New Treatment Options

Enjoy a guest post from my friend Jennifer Digmann:

It was Friday, March 21, and this whole Multiple Sclerosis thing started to get real.

Real and sort of scary.

Don’t get me wrong, I’ve been living with MS for nearly 17 years and have tried four different disease-modifying drugs (Avonex, Betaseron, Copxone and Novantrone). I have spent hours upon hours at physical therapy working to regain lost function.

Wow, you’d think I might have realized the disease meant business 12 years ago when it stole my ability to walk, but no, I didn’t realize it until two weeks ago when my neurologist asked how I was doing.

I thought for a moment and answered her honestly, “I’m a little more tired and weak than I’d like to admit. Especially with me just finishing another round of PT. My trigeminal neuralgia seems relentless. But other than that… oh and I feel sad a lot, okay yah, besides that I’m good.”

I even smiled meekly to prove it.

Dr. Braley waited a few minutes to process my words and responded, “It seems like you were talking about these same issues six months ago and they haven’t resolved any, huh?”

She went on by testing my strength. “You don’t seem to be much weaker than at our last appointment but either way, I don’t like it. And I don’t like you having constant pain.”

I don’t like it, either, and I responded to Dr. Braley:

“It is not like we haven’t tried,” I said. “I mean, I’m at my max for Novantrone infusions and this new drug combo you prescribed for my TN pain works pretty well. Besides, with Secondary Progressive MS there isn’t much out there for me.”

With me saying that, Dr. Braley quickly corrected me. “Have you heard of, or thought about, Rituximab for your MS? Then, maybe you should make an appointment with a neurosurgeon. He may have a solution for your trigeminal neuralgia pain.”

Uh, what? You’re talking about two things I haven’t necessarily considered, let alone heard of, Dr. Braley.

She gave me a good overview of each treatment and encouraged me to do some homework and think more about each of them over the next few weeks. I’m looking into them and, well, this MS thing is getting real.

In short, Rituximab, “… is a monoclonal antibody. This medicine changes the way the body's immune system works. It is used commonly to treat non-Hodgkin's lymphoma and other conditions. … It is also used to treat rheumatoid arthritis (RA).”

Other conditions… Well, Multiple Sclerosis in one such condition and I have heard great things about this medication. I am giving Rituximab a lot of thought and weighing my choices very seriously. But it got even more serious when, as I continued researching this medicine, I discovered an FDA alert about the medicine posted on the Healthline website.

Oh how I hate MS!

Now that I got that off my chest, I can focus on another real, scary thought: Neurosurgery to treat trigeminal neuralgia (TN). Neurosurgery severs the nerve. However, nonsurgical options like radiofrequency thermal lesioning or gamma-knife radiosurgery have also been used, thus several different treatments have provided relief for TN sufferers. Considering that one of these options has potential, back to the homework I go.

Yes, Multiple Sclerosis is frustrating and can be scary, but upon leaving Dr. Braley’s office, I felt optimistic. After living with the disease for such a long time, it’s nice to have some hope there are possible treatments that could alter MS’s course and rid me one of its most painful symptoms. 

Or, at least I can move forward feeling empowered that I am taking an active role in looking into ways that I can help to influence how this disease affects me.

Jennifer Digmann and her husband Dan Digmann wrote the inspiring book, Despite MS to Spite MS.

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