Howdy! I’m Sky, I’m 31 and I have known for ~2 years that I’ve got MS, my doctors finally caught up after 2 brain MRIs, 1 spine MRI, 4 CTs, and a lumbar puncture that got sent off to the Mayo Clinic (thank goodness). I’m waiting on scheduling to call me to set up my final “migraine” appointment and my first MS appointment. I promise this book is going somewhere, bare with me!
In the mean time, I’ve been in the mindset that I have PPMS and not RRMS which is why I believe it’s been so difficult to get this diagnosis handled.
Originally in 2016 after I gave birth to my now 8 year old I had begun noticing weakness in my left forearm upon reaching up to trim a tree branch back. It would shake pretty vigorously for ~20 minutes afterwards. I chalked that up to having a new baby, but it never really left. Beyond that I didn’t have anymore issue’s like it until…
Roughly two years ago I went through one of the most heartbreaking times of my life when my ex-husband and I separated, it was the worst depression I have ever experienced and hope to never experience again. During that time my left arm got significantly worse with the shaking after use and my left leg joined the party. It was pretty gradual, it wasn’t abrupt in any way. It started as pins/needles in my left side with a sharp pain in the upper right side of my head (weird, I know). I started to have trouble with memory and I’m the kind of gal who remembers phone numbers from childhood. I went to my primary care doctor who ordered a CT, said “everything looks great!” and sent me on my way.
October of 2023 (3 months following a total-hysterectomy) I had migraines for a week straight, I’ve had them all my life but they’re so regular I could almost mark the calendar for a year in advance to know when they’re coming, so I was concerned. I reached out to my (new) primary care who referred me to Neurology and ordered an MRI. That MRI was done in December and came back with a few non-enhancing lesions, one predominantly in the right side of my head, exactly where I’d felt the sharp pains! My neurologist told me “I believe these are connected to your migraines, lets set you up on migraine treatment and do a follow-up in 6 months, just to be sure”.
At this point I was frustrated so I contacted my primary, who had ordered the original MRI, and requested he schedule the follow-up MRI. He wanted to do it 3 months out instead and if necessary another 3 months later. So in March of 2024 I had another brain MRI, this time… the lesion on the right side of my head… was lit up like a Christmas tree. NOT MIGRAINES!
Since then we’ve done the lumbar puncture and my neurologist notified me of MS.
I told you I had a point! So now you can kind of see why I’m lead to believe its PPMS and not RRMS. I haven’t had any remission, none of my symptoms have gotten better, just a slow progression of new symptoms joining the party. Beyond the left sided numbness/weakness and cognitive issues I also have gained some bladder troubles since October that are seemingly permanent.
So, back to my question, how can you tell if you’re having a relapse or if it’s just slow progression? Is it easy to tell or is it pretty hard to interpret the difference? What was your progression like that made you realize you needed to see a neurologist, with PPMS or RRMS?
Thank you so much for reading my novel, any input is greatly appreciated while I anxiously await my first MS appointment!