This past week, I got the results of my most recent MRI. Among a couple other things which I address later, two new lesions made an appearance as well.

Good news is they were subtle, and they’re not actively demyelinating. That basically means that while they’ve arrived in the last year, there isn’t any activity currently going on. 

So, what does that mean? It means I’m changing DMD’s.

I feel like I’m just now getting into the groove with Plegridy, and now I have to switch. It sucks, but I’ll get over it.

Now, it’s on to Rebif. Instead of injecting every other week, now I’ll be doing it three times a week. That is the absolute worst part of the whole process. I’ll be injecting three times a week, and I’ll be on an overall double dosage of interferons.  

I’m most excited that even though my dose is increasing, each individual shot is SO much less than what I’m used to. Everyone I’ve talked to – from my Physician Assistant, to my Pharmacist, to others already on Rebif – says it’s much better tolerated because of the lower doses.

Hopefully this means I’ll be less nauseous and fatigued, and the rest of my symptoms will also subside a little. I can get through anything, but these side effects have been horrrible.

Moving on to the other little issues my MRI brought to light – one of which I’ve heard of before.

In early 1993, my Dad drove us to the hospital because he was having some really crazy things going on. He had a terrible headache and some vision changes, amongst other things. When we got to the ER, we found out he had Empty Sella syndrome. This occurs when your cerebrospinal fluid empties into your sella where your pituitary gland is located. The doctors refused to let him drive us home when they resolved the issue; my pregnant mom picked us up. 

My MRI showed that I also have trace amounts of CSF in my sella. Life is so strange sometimes.

It also showed that I have slight right mastoid effusion. This occurs when ear infections go untreated, and the mastoid becomes infected. So, I’ll be hitting up my PCP next week for a little checkup.

I’d also like to add that since I was a little girl, I haven’t been able to tell the difference between an ear infection and a headache. So the fact that one (or several) went untreated doesn’t come as a surprise to me. 

What does this all mean for me, in the short and long term? Not an enormous amount, to be honest. It did bring a new level of awareness of my disease progression. Now that I know there’s an issue, I can work on it. Get going on Rebif, tighten up my diet, practice meditation more faithfully, etc. 

The same goes for my CSF and ear infection issues – neither are acute or worrisome right now. Being aware of potential issues puts me on the alert, so I can intervene before anything becomes more serious. 

It’s so weird to feel grateful at a time like this. But I do. 

Don’t get me wrong – I had a day all in my feelings. Mostly about the fact that my doctor originally wanted me on Rebif. At times like these, when insurance made the final decision, I just wonder what if. What if a corporation wasn’t allowed to make the final decision in my healthcare – would I have had any progression at all? The insurance debate is a whole other debate for another day.

But…

I was diagnosed in 2018. If it had been 1988, I’d have almost no treatment options or advanced imaging to assess what’s going on. 

The few new lesions I have are subtle, and not active. As long as I stay ahead of it, and I respond well to the Rebif, there’s no reason I should have any progression for quite awhile. 

Fingers crossed on that one. And, the other little issues are more interesting than concerning. 

So overall, I’m grateful it wasn’t worse. I know what’s going on and can adjust my plan off attack now that I have a new awareness of the situation. I’ll be sure to keep everyone updated on my transition to Rebif!