MS Hugs, Banding,Chest Pain

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.

School Recess and Lunch Times

I am not sure if this is a nationwide problem or a local one, but I do know that it is a present problem.

My seventh grader has 30 minutes for lunch, that is his only break during the school day besides the 3 minutes he has to get between classes and his locker if needed. More than half of the time he says he does not have enough time to make it through the line for food. There are so many children in his grade they split between two lunch times and yet, when there’s testing they are combined. Combining an entire grade into a situation where it is already difficult to buy lunch is bananas. Yes, I know I could pack lunch for him every day, he likes the options at the school.

My first grader has two recesses, one just for playing and then one during his lunch break. He has plenty of time to eat but not a ton of play time to be outside. I personally do not understand how they expect children to focus and get enough time outside to be kids when they are stuck in classrooms for 6-8 hours a day with tiny little breaks.

I do understand they are trying to put as much learning as possible into the day; would people really be up in arms if they add an hour to the school day to include more breaks and outdoor time? I would think that adding the hour for extra breaks and time to run around would be good, there are many working parents who either have to figure out child care for after school or arrange their schedules around it. For the families that don’t get home until dinner time because of jobs it’s usually not a great time to play outside during the fall and winter months.

Of course there’s the argument for after school activities and allowing time for that and if a person is set on having outdoor time than you can sign them up for those. Here’s the thing though, those things usually cost money, not all families have the ability to pay for all the things that go along with those. My children are hyper-mobile so they have crazy ligaments that move too much which makes injuries more likely and more severe. They have been told not to play contact sports, no soccer, no football, rugby, so that really limits the options in our house.

Do you have an opinion on the current amount of breaks for kids at school? I would like to hear them!

Update on Stem Cells

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.