Summer Heat and Multiple Sclerosis

Summer time brings to mind beaches, swimming, vacations, outdoor activities with your children. For those with MS, it means that but it also means cooling vests, air conditioning and if your MS gets aggravated by the heat, increased symptoms. This effect was first noticed in 1824 when Charles Prosper Ollivier d’Angers put a patient in a hot bath and noticed worsening symptoms. Wilhelm Uhthoff noted that this not only occurs with patients in a hot bath but also with increased core body temp due to exercise and activity.

“Demyelination produces alterations in saltatory conduction, slowed conduction velocity, and a predisposition to conduction block. An estimated 60–80% of MS patients experience temporary worsening of clinical signs and neurological symptoms with heat exposure.”  In addition, lesions can occur in parts of the brain that manages temperature regulation.

A report on hypothermia in MS lists different MS patients who died due high temp levels and the inability to regulate their temperature. A temp of 32 degrees Celsius (89.6 Fahrenheit) caused the death of a female MS patient in her early 60s  in 2018. I feel this is not discussed as often as it probably should be. At minimum I think the doctors should be advising their patients of possible issues rather than finding out on their own. There are people newly diagnosed that don’t do research because they believe their doctors will tell them what they need to know.

“Fatigue during thermal stress is common in MS and results in decreased motor function and increased symptomatology likely due to impairments in central conduction.”

How this shows up for me means no hot coffee, hot beverages increase my core body temp so even in the winter I drink iced coffee and iced tea. My house is set to 74 degrees Fahrenheit during the warmer and hot months. When the ambient temp reaches 75 all of the nerves in my body react, electricity pulses through every nerve causing a ridiculous level of pain.

Things that can help cool you down after exposure to heat or increased core temp are frozen treats, ice cubes, ice packs on your body, cooling vests, very cold drinks, and cool showers are some that work for me. I choose to spend the hotter parts of the day and season in side where I can regulate my body temp because sometimes it is days before my body recovers from over heating.

I have tried several types of cooling vests, all are meant to be worn close to your skin under your clothes. The cotton vest which the style is most like a regular vest in style is fine when you put it on but once it is no longer icy it is just very heavy and bulky. I tried another that used columns of ice packs in a lighter weight style vest, but it was still bulky under clothes. The most recent one I purchased is made of the wicking type material used in sports clothes so it is light weight and does not add a bulky layer of fabric when you are trying to cool down. It is a little longer than a sports bra and uses columns of ice in pockets; this allows you to add as much or as little columns and you need and can be replaced fairly easily. It fits ok under a sundress so while it will still be noticeable it looks more like a bra than a weird accessory and replacement columns are small enough to fit in a lunch box sized cooler if you are going to be out for the day.

Sources:

wcmea_newsletter_fall_2010

Hypothermia in MS

https://www.physiology.org/doi/full/10.1152/japplphysiol.00460.2010

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980380/

https://www.stuff.co.nz/national/100921402/christchurch-woman-with-multiple-sclerosis-dies-of-overheating

https://www.webmd.com/multiple-sclerosis/news/20150527/ms-may-raise-odds-for-earlier-death-study-finds#1

7 Strategies for Coping With MS Heat Sensitivity

 

 

 

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!