“My skin hurts.”
I first spoke that statement years ago. I wish I could remember how many precisely, but I don’t. I just know I was working at Our Lady of Peace and I have a vivid memory of googling, “Why does my skin hurt?”
I told my husband back then (I’m going to guess 3+ years ago) that everything just hurt to the touch. So when that happened again this past November, I was put on high alert. I hadn’t remembered it being this intense. All down my shoulders, my arms, my sides, my chest, my stomach, but ESPECIALLY the back of my head and down the right side of my neck. If someone even slightly grazed my arm for instance, it would HURT. SO BAD. I scheduled myself an exam with my primary care doctor, except she wasn’t going to be in that day. I would need to see someone new. I didn’t care. I just wanted to be seen.
I went to my friend’s house (a physical therapist) the night prior to my appointment, explaining the pain to her. It was turning into almost like electrical shock type pains, where I would be fine and then BAM, voltage up and down the right side of my neck. She did a full workup, we ended up doing some dry needling in my pressure and trigger points, and I was so hopeful I would wake the next day feeling better.
It didn’t help. Which was fine, at least I had more to offer the new doctor I would be seeing. He was so kind, patient and thorough—I was shocked honestly. I told him we had met our healthcare deductible and that my mom was flagged for having an autoimmune disease, they just hadn’t located which ONE yet. I said, “Can you just check me for literally EVERYTHING?” And he DID. He ran a million blood tests [yes, that’s a stretch], checking for autoimmune flags, my thyroid, and more. He ordered an x-ray of my cervical spine and said, “I’m sure it will show nothing, and when it does, we can do an MRI.” He didn’t have an answer for me upon seeing me, but agreed it was strange and he wanted to help find an answer.
I left that day at least feeling hopeful for the tests and scans that were done. And when I woke up the next day, in more pain, with more ‘voltage’ doing down the side of my neck; I remained hopeful. Work was hard though, it was a Friday, and so many people were kind and empathetic as I would wince in pain throughout the day. They began to wonder and speculate, “Maybe it’s shingles, just without a rash?” I google, “Shingles without a rash…” and then my normal PCP called me. I presented the idea to her, ‘shingles without a rash,’ and when I described the pain, ‘burning, intense stabbing pain, some itchiness,’ she said that it COULD perhaps be that, and with it being the weekend, she was okay with prescribing me an antiviral for Shingles. Once again, I felt hopeful. Maybe it’s shingles, maybe this was the worst it was going to get. I would start antivirals, so many people said if I caught it early (shingles) and started the meds, everything would be so much better soon. The other primary doctor had also called me in Gabapentin, a nerve pain medication, so I had both of those things. I photographed a school event that evening and came home with tears forming.
The weekend came. I took my antivirals as directed. Started Gabapentin. And the pain turned into something worse than I have EVER felt. I wouldn’t wish it upon anyone…I was still declaring it as ‘shingles without a rash.’ I read article after article and was convinced that is what it was:
”The symptoms of ZSH (shingles without rash) are similar to the symptoms of shingles, but without a rash. The symptoms are usually isolated to one side of the body and commonly occur on the face and neck, and in the eyes. Symptoms can also occur in the internal organs. [Website info linked here.] Typical symptoms include”:
a painful burning sensation [ME]
itchiness [ME]
a feeling of numbness [ME]
fatigue [EXHAUSTED FROM PAIN, ME]
pain that radiates from the spine [ME, LOWER BASE OF NECK]
sensitivity to touch [ME]
Flash forward a few days, after the pain made me hit my knees in anguish and despair; after I felt like I couldn’t possibly live through this. The doctor’s assistant called and said, “The doctor would still like to rule EVERYTHING out, are you open to getting an MRI?” Flash forward to when the pain DID stop, but slight itchiness remained. I had declared it ‘shingles without a rash,’ and thought that was it. I said yes to the cervical spine MRI, told the technician, “I’ll be shocked if you find anything,” with confidence as I left, and went about my day.
The very next day, I was driving to pick up a former student to take her to her OB appointment, my phone rang, “Baptist Eastpoint” flashing on the screen. I answered, and I’ll never be able to forget the assistant’s words…”Your MRI shows a loss of nerve insulation, which could point to MS. You’ll need a brain MRI for further testing.” I cussed, then apologized, then rapid fire I called my mom and husband relaying her words. I didn’t have time to process, I picked up my dear former student, chatted and laughed with her, and texted everyone I am close to, including my new principals, asking for prayer.
Asa took the the day off to be with me at my brain MRI appointment. I don’t think he will mind me sharing that he had a pretty good breakdown the night prior. Throughout this very fast paced journey though, I have felt peace. Peace that only come from God himself, otherwise how would you explain it? We all had eye doctor appointments that evening and I let our ophthalmologist know what my doctors were looking for. He did some extra tests, and found that I have a new ‘speck’ in my left eye. He said it’s a sign of recent inflammation, somewhere in my body, and that if I saw a neurologist to let him know because he would share the results. [Nothing to be concerned or scared of yet, just a speck that’s there and we will need to keep an eye on.] By the very next morning, I had pictures of my brain scans. The radiologist reported,
“The MRI findings are highly suspicious for multiple sclerosis with a multitude of white matter lesions as described above. Correlation with CSF studies also recommended.”
My normal PCP referred me to Norton Neurology. The short version story of that is that their office was terrible at getting and finding me an appointment, even though the scans and results were marked urgent. They were so hard to communicate with and dialogue with. A friend of a friend asked if I would be ‘open to seeing a different neurologist,’ and I said, “Girl, I’ll see whoever will see me ASAP!” Lo and behold, another God moment, when I called U of L Health MS Clinic, the office manager answered and immediately got to work for me. Within MINUTES she had my brain scans in her hand. She also called and got my ophthalmologist report. And she got me an appointment within 48 hours to see the neurologist there, Dr. Robertson. “With scans like these, you don’t need to wait ANY longer,” she said. It had felt so impossible to even get an appointment prior to this, I was giddy, literally, with excitement to see a well known and reputable neurologist.
And there we have it. December 7th, 2023, I met with a neurologist for the first time in my life. He spent HOURS with us, going over the scans of both cervical and brain. He was 99% positive this is and was MS, and he ordered a lumbar puncture (spinal tap) just to be certain. They scheduled me an appointment the NEXT DAY for that, and they said, “This never happens, to get an appointment with radiology so soon, usually it can be a month or longer.” I smiled and said, “I don’t know how you feel about God, but if you don’t believe in Him yet, you should. This entire process has been one miracle after another, with God working in crazy mysterious ways.”
I had the LP (lumbar puncture) on a Thursday, and while I was then bed-ridden for FIVE days with a post lumbar puncture migraine, it confirmed MS. I ended up needing and getting a Blood Patch procedure, and thank God it worked quickly for me. I was back up and on my feet the next day, finally getting to go back to WORK!!
A thoracic MRI was next, to get a full baseline of my spine. We had a follow up visit December 27th to discuss results (NO lesions or white matter whatsoever there in the thoracic region, praise Jesus!) and to talk treatment. At the first appointment, the neurologist had said to us, “Seeing your scans and how substantial and aggressive they are, it’s quite remarkable that I am seeing you in front of me with really NO outward symptoms of MS. Our goal is to keep it this way.” I will start Kesimpta shots monthly, and prayerfully it will do its’ job to stop new lesions from forming. We will of course need to get new MRI scans in a few months, of both brain and cervical, and we will stay prayerful and hopeful from now until ever.
I have seen God throughout this entire thing. I don’t LIKE what I see in the brain scans, but it doesn’t scare me. Because of Him, I saw exactly the right people I was supposed to see. Had all the appointments I was supposed to have. And I now have an incredible team of people who are fighting for and with me. I can see fine, I can run and lift weights. Like the neurologist said, I do not currently HAVE typical MS symptoms. I have a lot of new muscle spasms (or maybe I literally never paid attention to them before?) They’re frequent, but not painful. And the memory fog / slip up of words is a real thing. But that’s it? I am so thankful.
Oh, and the pain I was feeling in November? The insane burning/stabbing/jolting pain—that was definitely an MS flare up, and it’s what resulted in me getting diagnosed. I find that part fascinating. They saw a large lesion of white matter in the left hemisphere of my brain, and the neurologist said that was from an extreme flare up that must have happened within the last 30 days of the brain scan. Ding ding ding. I did need to take steroids for days, to help the inflammation and swelling of that lesion go down. Oh and my TSH (thyroid) bloodwork was the only other thing that came back ‘abnormal,’ as it’s almost at 0.0—and that makes complete sense now, with all the inflammation my body has been battling. The spinal tap ruled out any other autoimmune diseases, and it also ruled out infections.
It’s been four weeks since the original testing and scans and three that I’ve had the diagnosis of multiple sclerosis. This has been the most IN MY FACE, I have seen my Creator work. Why is this part of my journey now? I do not know. But if I were to look at each chapter of my story and look at how He has worked and used me…I’d say this is going to be a pretty big page turning path that I now have to walk. It’s been pretty easy to believe and trust in God, because I’ll be honest and real, my life overall hasn’t been THAT difficult. Sure, struggles here and there, doubts here and there, but really I’ve said with ease my whole life that I believe in Jesus and God as my Creator, and I have trusted Him with it all. I am grateful to have been blessed for SO long, but now the rubber is going to meet the road and I am relieved to be able to cling to HIM.
Special thank you to the University of Louisville MS Clinic and my team there. All of you have been more than kind. You’ve been loving, empathetic, a listening ear, and a group of people I believe God orchestrated for me for this new journey.
