Things moved surprisingly quickly after my emergency room visit on January 11. I immediately heard from the MS specialist to set up my consultation, my OBGYN to meet with maternal fetal medicine and the eye doctor who sent me to the ER. They weren’t messing around, and I appreciated the sense of urgency, especially since I was still blind in one eye.
I met with an MS specialist that Wednesday for a consultation and I was a nervous wreck. I had been looking a lot up online about MS and was worried about what type I had, as there are several. I’m not going to get into all the different types, but based on my heath history the doctor believes I have Relapsing-Remitting MS (RRMS). Of course, as I mentioned in my previous post, there is no one test that shows you have MS, it’s a process of elimination. So she ordered blood work for other infections or diseases that sometimes mimic MS, mine all came back negative.
In a nut shell, with RRMS, attacks ebb and flow. When attacks occur, those are the times that the disease progresses and I will experience symptoms depending upon where the lesions occur in my brain, optic nerve and/or spinal cord. When I am not experiencing an attack, I am in remission. The symptoms will hopefully then disappear during these times, even though sometimes this is not the case, but there is no disease progression. Remissions can be for weeks, months or years, I hope that I am the latter.
When I started looking more up about MS and reviewing the symptoms, a lot of things that I wrote off as normal were more than likely MS attacks or exacerbations and she agreed. Tingling in my hands and feet for several days, my entire foot going numb while running, the 2019 eye issue, etc.
Going over my scans, she said I had about roughly 10 lesions in my brain, so she seemed surprised I didn’t experience or wasn’t aware of more attacks in the past. Of course, I could have and I just don’t remember, because I chalked it up to a pinched nerve or something else. She did mention that disease progression and lesions can occur without symptoms because the other parts of the brain take over when the other parts can’t do their job. Our brains are truly amazing. With that being said, I’ve more than likely had MS for years and just didn’t know it. I find peace in knowing that I’ve lived with this for awhile, at least 5 years we think and I’ve been functioning just fine! This is going to sound rather odd, but I am thankful that it finally presented itself as a severe case of Optic Neuritis. Even though it was awful and at times debilitating, it was enough of a red flag to bring me to the doctors and quickly receive a diagnosis of MS, even without a MRI with contrast or spinal tap. For some people this takes years. Don’t believe me? Please take a moment to look up Selma Blair’s MS story, that woman has been through hell and back. I now have the opportunity to work towards curbing the progression of the disease with disease-modifying therapies (DMTs) as there is no cure for this, yet. I won’t be able to start any DMTs until after the twins are born, but I will begin as soon as I can. 30, 20 or even 10 years ago my treatment options would have been limited or nonexistent. However, so many new DMTs have come to the market since then and research is being conducted daily to find new treatments and hopefully a cure. I don’t know if they will find a cure in my lifetime and I’m not banking on it, but I can at least be optimistic, what’s the harm in that?
I left that appointment feeling very hopeful about my future with this disease, my pregnancy and my vision. I was able to quickly start a steroid treatment administered via IV for one hour a day over three days to reduce the inflammation in my optic nerve and to recover my lost vision. I could tell a slight difference even after the second treatment and I am happy to say that the vision and color in my left eye is back to normal, so I can finally drive!
I do want to say that the day after my consultation, my husband did get to have his shoulder surgery as scheduled. What a pair we made that week, but we pushed through. One of the main reasons we were able to push through was because of my parents, and to them we are both thankful! From my dad driving me and my husband around to our appointments until I could see again and confidently drive, to my mom making us meals for the week and watching our daughter so we could both recuperate. We couldn’t have done it without their love and support, we will be forever grateful to them for making that stressful time a little less stressful. I also want to thank friends and family who I told soon after I was diagnosed for their love and support too. You all made me feel understood and not so alone. The power of a fresh bouquet of flowers to lift a spirit, mine specifically, is almost magical, so thank you. It’s a good feeling when I am able to talk and write about it openly, I’m just so very hesitant. “You can’t unring a bell.” Once this very personal piece of information is out there, I can’t take it back and I can’t control how people will react to it or to me. There’s that word again that I talked about in my previous post, “control”, seems to be a common theme.
In regards to my pregnancy and MS, it should be status quo the rest of the time, I hope! The surprising thing was that I had an attack while pregnant which is unusual, but not impossible. Our immune systems are suppressed during pregnancy which reduces the flare ups, I guess I just wasn’t one of the lucky ones to experience that. The major concern is after they are born. After pregnancy our immune systems ramp back up which causes a strong possibility of an attack postpartum. This is why I want to start DMTs as soon as possible so I can try to avoid the impending attack. One other concern is the ability to have an epidural during labor depending on if I have any spinal cord lesions. It’s a possibility that I won’t be able to have an epidural or if I have to have a cesarean I will have to be put fully under according to my OBGYN. I’ll be talking with an anesthesiologist in the next few weeks to discuss my options. I’d rather know now what I can and can’t have, then find out the day the twins decide to arrive.
Now you are all pretty much caught up with my MS journey thus far. I have a follow up appointment with the MS specialist next week so she can test my vision again. I also have several more questions to ask her that I have been writing down as they come up. Until then I plan on just living my best life (albeit with a lot more intention), spending my time with my family, working, taking care of myself, getting ready for the twins, writing, slowly telling a few more people about my diagnosis and having as much fun possible as I can in the middle of a pandemic while pregnant!
Be Well – Be Happy – Be Kind – Be Present
-Ms. Meant To Be
MS. MEANT TO BE 