Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.
MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.
From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.
My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.
While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.
I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?
People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.
The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.
Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.
I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.
I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.
Before I was diagnosed with MS officially I had been having severe chest pressure frequently. When I was in high school I had a heart condition that required use of beta blockers. The first thing I thought when I started having chest pressure was that it was my heart again.
No, I did not go to the ER, I hate hospitals, I spend way too much time at medical facilities and doctor’s office. Instead, I made an appointment with my cardiologist. Several months of testing, EKG, ECG, Stress Test, 30 day heart monitor and so much blood work she ruled out my heart. Did she have an answer or suggestion? No, her response was that “it wasn’t my heart” and so her part was done.
More than 2 years later when I was finally diagnosed with MS I was informed that there was a lesion on my spine that was most likely causing the MS Hug. Hug my behind! From that point on whenever I have chest pain/pressure I just figure it is my MS. These hugs or banding as it is also called stopped after I got my stem cell treatment. Though I hadn’t really noted it until it came back last week.
For those who don’t experience this weird symptom of MS, it can be different for everyone. For me, it feels like a 7 pound weight on my sternum applying pressure to my chest that makes it difficult to get a full breath of air in my lungs. Sometimes there is a deep, sharp pain in my chest followed by this pressure. The weight is heavy, the pressure is firm but not heavy enough to make it feel like your bones will break. Some people experience the hug for a brief time, for others it can come and go for days, my is the latter. I have to remind myself that it’s not my heart every time it happens because it’s alarming.
When I have the moments like these, it makes me wish I have a friend in the medical field who could explain all the science to me. Our bodies are weird and mysterious and I am always in awe about how one tiny spot in a particular section of your nervous system can wreak havoc on so many parts of your body and life.
My first post on this page was about the stem cells I got for my MS. It’s a very expensive process and a personal choice because as of right now it still is not approved in the US so insurance does not cover it.
Ideally you have this procedure, you see improvement and you don’t have to do it again. Looking back I realize that the stem cells probably gave me a boost in energy during the first few months in addition to the other pleasant changes.
15 months later though I am seeing decline in the changes I originally saw. Whether this is due to my MS re-damaging the areas or what I am not sure. I am not a scientist, though I do love my research.
Originally, before my stem cells I hadn’t been able to feel my feet for nearly three years and then less than a week after the stem cells my feet magically reappeared, at least that’s how it felt. I also had moderate back pain in my spine since 1999 or 1998, honestly it was 20 years ago so I am not sure anymore, that was gone as well.
I thought this back pain was from the first car accident I was in but now that the pain is coming back after being gone for almost a year I am wondering if it is actually from the lesion on my spinal cord in the same area. I know I have an old lesion there because they told me that’s probably the reason I had severe MS “hugs” for several months in 2011.
That’s the kicker, so much money spent, so much hope put in because the pain was gone for the first time in 20 years and now, after a little more than a year it’s coming back. The feeling in my feet is slowly going away too. There is still enough there at the moment that I can sense them, but enough lost that I know what’s coming.
Would I do it all over again knowing? Probably, if I had to do it all over, it was a nice break from pain while I had it. Though I feel terrible that support I received to pay for the procedure ended up not being long term.