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.
They don’t tell you to prepare for the unbearable nerve pain that comes with MS. Apparently it is not one of the “more common” side effects of the disease so count yourself as lucky if you do not get this.
I take Amitriptyline for my dysesthesias, it is an “off label” use for this issue but it has been working for me, more or less. Though the last few days I have had increasing nerve pain that started in my legs only at night and progressively moved to my full body and all day. Yesterday was the worst, it got so bad I was ready to go to the emergency room, and I HATE emergency rooms. I have spent too much of my life in hospitals to go there unless it’s the last resort.
It felt like someone was stabbing every part of my body with little needles, and not just my skin (that’s what happens when my core body temp increases to much, another fun thing with MS) all of my organs too. It is hard to properly describe what it feels like to have your entire body being pricked with needles and how you can feel it in your organs, but it is not hard to explain that this pain changed my level of patience with people, my pets and my kids.
Driving home with my children, I was in so much pain my body was moving in response. My oldest told my husband later that it looked like I was trying to use the force on cars in front of us with my hands while they were still on the steering wheel. I felt my upper body contorting to try and relieve the discomfort, it did not work. The normal bickering of brothers drove me mad and when children tried to hug me goodnight I cringed and had to tell them to stop. My husband held my hand as long as I could stand it while we were watching a show and I finally had to pull away because the sweet, loving gesture of rubbing his thumb on the top of my hand was causing me pain.
I ended up taking an extra pill of Amitriptyline, I normally take 2 but the doctor said I could go up to 3 so I knew that was ok. I also took a Vicodin that I had for my migraines and back/hip pain. Then I put ice packs on my body so I could numb the sensation a bit and finally got to sleep. This morning I am in less pain so I will be increasing my dose temporarily and speaking with my doctor but I have staved off another trip to the ER for today.
It’s hard to explain to children why you are extra snappy on certain days and what the sensation you experience feels like so they can understand. It is also heartbreaking for me to have to tell my kids they can’t touch me because it causes me pain.