So Christmas came and went, and then came January, when we got to drive to see my nephew, who is currently serving in the military. Even though we only got about 5 hours with him, it was so good for my heart to be able to take him to lunch and just hang out and chat with him about LIFE. He is such a wonderful young man, with his entire life in front of him. I know that God will use him to do great things.
As far as the MS - well, my doc tested me for a couple of sub-groups of MS - anti-MOG disease, and Neuromyelitis Optica. She was concerned that my level of disability was going DOWN, and that it hadn't stabilized on the Gilenya, my current MS medication. I've been taking that for almost a year, and she states that I should have stayed at the same level of function (since I haven't had any new lesions or lesion growth) since I started Gilenya. They're also concerned because my pseudo-relapses, which are times when your current/existing symptoms flare up, are lasting for weeks at a time, and leaving me in a worse state than before I have them. This is also very uncommon, apparently. So, she opted to have me get the blood tests for anti-MOG and NMO, to see whether either of those were in play here. Thankfully, those were both negative. However, that also means that either my disease course is just "like this," or I am having a negative reaction to the Gilenya. We talked at length at my last appointment, and decided we are going to move to a different, stronger medication.
There are a few different kinds of MS medications, but you have to remember something. None of them treat the symptoms of the disease, or "heal" the damage. Their only job is to slow the progression of the disease by preventing new lesions from forming, preventing current lesions from growing, or POSSIBLY shrink current lesions. They all work in very different ways, with different chemical makeups. There are three basic "types" of meds - the oral pills, the injectables, and the infusions.
There are a few oral meds, and my Gilenya is one of them. They are all about the same "strength," according to my doc, so she doesn't think that going with one of them would be much better than what I'm already on now. As far as the injectable meds, they carry a high risk of depression, and I already struggle with that - so that's a no as well. That leaves the infusion meds. The options for me would be Tysabri, Ocrevus, or Lemtrada - in that order. Tysabri was my first choice, because there are a lot of good reviews on that one - how it actually has a GOOD side effect of helping with fatigue and cognitive function. However, there is a virus that about 50% of people have in their body - they are considered "carriers" of the virus, but they don't have symptoms. Anyway, if you have high levels of this in your system, you cannot take Tysabri, because it could lead to a fatal brain infection called PML. Low/negative levels are considered anything under .4, and they test you before they ever let you try this infusion. My levels are 1.64, so that means Tysabri is no longer an option.
Next in line is Ocrevus, which carries its own set of risks as well. We're going through the labs and insurance approval process now; it takes a while, so I don't think I'll hear anything for a week or more. If I am approved for this one, it will work like this: The first infusion will be split into two separate half-infusions. I'll get one on one day, then go back two weeks later for the second half. You have to go to an infusion/chemotherapy center, because the medicine is infused into your body through a vein, and the nurses have to monitor you during and after the infusion for any reactions. If you have a bad reaction, they stop the infusion and you have to change to yet ANOTHER medication. Hopefully, I won't have any bad reactions and the insurance won't be an issue, but we'll just have to wait and see.
The final medication option is Lemtrada, which you usually cannot even get unless you have failed at least two other MS medications. This medicine is, according to my doctor, the strongest one out there, and it's the closest thing they have to a "cure" right now. You get two "sets" of infusions. The first set lasts almost a week, and you get a 4 hour infusion every day. Then you get another set of infusions, over a 4-day period, a year later. After that, you potentially don't need any other MS meds for several years - and some never need any more meds. The idea is that they bind to and kill the lymphocytes (white blood cells) that are involved in the process of the immune system attacking the myelin (nerve covering around nerves, this is what causes MS lesions). The immune cells which grow back after treatment apparently don't cause damage to the nerves anymore. My doc actually said it's very close to the stem cell transplants that are currently in trials for MS remission.
That's the plan for now. It's a "let's wait and see" kind of plan, the kind I don't really care for myself. Unfortunately, this is the disease of "hurry up and wait," which I'm sure is one way God is changing me. I never really had any control over my future or my plans - but I sure wanted to think I did.
I did get a new pain medication, and that has been helping with my Trigeminal Neuralgia (facial nerve pain) and all of the other nerve pain I have every day. We've upped my dose of Baclofen, which is my muscle relaxer, because my spasms are increasing and becoming more sudden and more painful. The other night, I had a full-body spasm that was so bad that my body hurt afterwards. It was one of the most violent spasms I've ever had. The downside to the new pain meds and the increase in others is that I am now more drowsy, dizzy and weak than I was before, and it almost makes me want to quit the pain medication. Sure, I don't want to be in pain - but I need to be able to function, and the mental affect of these meds are making that so difficult, so many days. I may try to just get the dose of the pain med lowered, and see if that helps.
I use my cane more often these days. It helps on those days when something is in a spasm and it's affecting my walking.
I've learned, over this past year, that managing a chronic illness like MS is almost a full-time job. It is exhausting and stressful, which certainly doesn't help how I ALREADY feel just from the disease itself.
Yet, I look back and see God's faithfulness in how all of this happened...
For a while, I was angry that none of my doctors back in Maryland had ever done any tests, 8 years ago, when I had my first spells of dizziness and fatigue.
Then I realized something - If I had been diagnosed back then, I wouldn't have been HERE, in the Dallas/FW area, with the knowledge and expertise of multiple teaching hospitals and some of the best medical talent in the nation. And, if had been diagnosed at 31, when I first had symptoms - I wouldn't have had Eli...and I cannot imagine my life without that boy in it.
So, truthfully, the delay in diagnosis was a blessing. It was God's way of giving me this sweet little guy who lights up our lives.
God also led us to an incredible group of friends at our church back in October 2017 - just a month before I heard the words "You may have Multiple Sclerosis" for the first time. He brought this amazing group of families to us at the exact moment that I would need the support. He knew how much our lives would change this year - and He knew that I wouldn't always be at CG, because of how I would be feeling the past several months. He knew that I would be missing that community of athletes terribly, and so He brought me another family - one who has showed up in our lives, without fail, whenever I've needed a listening ear, a hug, a prayer (or two or three), or a laugh. Always there. Always. God is so amazing at how He perfectly arranges our circumstances, even in the midst of our hardest challenges or most devastating heartbreak - so that we never have to face any of it alone. I can look back and see His constant faithfulness, even when He didn't take away the pain or weakness, even when I can't sleep, even when our funds got low because Corey lost his job - despite ALL of that, He was always right there.
I'm spending more time with Him lately. I love starting my day out with 20-30 minutes of time with Him. I may be sleepy, and I may doze while I'm praying - but I'm pretty sure He's smart enough to figure out what I was trying to say before I started to snore a little. I'm learning to look more at the good things in my life, and to just accept this disease for what it is right now. Not that I'm giving up - I'm not. But I have to be able to work around my MS, doing what I can, when I can - and not feeling guilty about the rest.
Will the Ocrevus work? I hope so. If it doesn't, or I have a bad reaction or horrible side effects, then I guess it's on to Lemtrada. Not sure what the other options are after that...maybe they'll have some more medications available then. Who knows. I know it's not my job to try to figure it out, though. I just take each day as it comes (or at least I try to anyway). I'm not always very good at not feeling sorry for myself, and I still worry. But I'm working on it, and, most importantly, I'm actually trying to let God work on it now.
Ya'll have a good weekend! I need to go bathe that amazing little blessing of mine, Mr. Eli...
