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Multiple Sclerosis

Stacy, age 39, Chicago, Illinois, USA, Multiple Sclerosis (MS)

Life Before MS

Before I was diagnosed with MS I was a competitive tennis player and athlete, and I was pretty healthy growing up. I think the worst I had was mono in high school. That was it

The first time I noticed any symptoms was in the spring of 2008, when I was 28 years old. At the time, I was preparing for a move to Florida, and I was having very strange fatigue issues. I would have crazy fatigue attacks, but I attributed it to the packing I was doing, getting ready to move and all of the stresses associated with that. Unfortunately, it kept getting worse. There were many times where I would wake up on my sofa with an entire mouthful of food – I would literally fall asleep in the middle of eating.

I woke up one morning, about a week before I was set to move, and I had hardly any vision in my right eye. I went to the doctor the same day. He said it was just a fluke and to just come back if it gets any worse.

Two days later, it went from bad to worse and I literally couldn’t see at all. A different doctor sat the same facility told me again, it was just a fluke.

I remember saying to that primary care doctor, “Well, maybe I should go to an eye doctor.”

The doctor’s response: “Well, I’m looking at your eye, and I don’t see anything.”

Luckily, I had recruited a friend to drive with me for the move – between the vision and fatigue, it was a good call. I got to Florida, my friend had just left, and I was having dinner with my parents. While we were eating, I had one of those fatigue attacks. My dad said, “I don’t care what the answer is, but I want to know what you are on.”

He thought I was on drugs!

I explained, “I am not on anything. This is just happening to me.”

I proceeded to catch them up on what I had been going through in the weeks leading up to my move. My mum made me an appointment at an eye doctor.

Getting Diagnosed

At the eye exam, the doctor said, “I think we need to send you to the hospital for an MRI, so that we can rule out a brain tumour. Given your age and symptoms, I think what we have here is Multiple Sclerosis with optic neuritis.”

It turns out that optic neuritis, the swelling of the optic nerve that results in vision loss, is often the first presenting symptom of MS, especially in women in their twenties.

I got diagnosed with Multiple Sclerosis (MS) in August of 2008, when I was 28 years old. Everyone I knew was either falling in love, getting married or having children; here I was falling for no reason, getting muscle spasms I could not control, and having problems speaking (I was starting to slit my words). Life as I knew it would not be the same ever again.

No one in my family has MS. I had heard of the condition, but never knew anything about it before my diagnosis. I recall asking the doctor, “So what am I looking at here? Do I take a pill for the rest of my life?”

The doctor said, “It is a little more complicated than that.”

Initially, I went on a trial medication called Tecfidera [which has now been approved by the FDA], but I had a horrible reaction to it. These MS medications sometimes have side effects that are worse than the actual MS itself. In fact, I had just started my first job as a school teacher when I had a bad reaction to the medication. The whole situation was awful.

I stayed on the trial medication for nearly two years, but I had to discontinue treatment due to the horrible side effects. My hands were swelling so much at night that I had to sleep in braces in an attempt to keep the swelling down; every morning I would wake up and immediately cry from the pain. My fingers grew about four ring sizes overnight. It was crazy what the medication was doing to me!

A specialist I saw in Boston suggest I try another, more traditional MS medication called Copaxone, which is a daily injection. Unfortunately, I had to come off of this medication too, due to different but still very awful side effects.

I saw several doctors over the course of several years. I would be remiss if I did not point out that no matter what symptoms I would describe (muscle issues, pain, fatigue, anxiety, problems sleeping, etc.), any remedy offered always came in pill form. Every single time.

I think for the first seven years of my diagnosis, I spent the majority of time in bed – not doing much with my life. I was so over medicated and just not myself. I was a shell of my former self for way too long.

Hoping for a Change

Near the end of 2012, may parents decided to reverse retire and moved from Florida to Chicago, where they had first met and had me. Still in no shape to take care of myself, I went with them. Now, I’m not a parent, so I’ve only heard about the kind of love that parents have for their children. How these two incredible humans managed to deal with me in the state I was in – AND love me through it… I have no words. I am simply, forever grateful.

In 2015, following the sudden death of an old love and in dire need of a change, I moved overseas. Initially, things seemed to be going well, but eventually I started having new symptoms, indicative of a relapse.

It was very difficult navigating the he health system in a different language. I became so frustrated and so sick, that after seven months, I decided to move back to Florida to be near my neurologist.

When I arrived for my visit with my Florida neurologist, I had to wait two and half hours to see her. I finally saw my doctor and started to explain the symptoms I was having. After twenty minutes, she just said, “I’m sorry, but I have other patients I need to see.” She proceeded to give me prescriptions for several heavy duty medications and sent me on my way. I was so infuriated that I ripped up the scripts and said to myself, “I’m done with the doctors, I’m done with MS, I’m done with it all!”

I was angry. I was frustrated. I was depressed. I felt hopeless. I was at a dead end.

Two days after that appointment, I wound up taking the wrong medication when I was in a fatigued state. I was in a coma and on a ventilator for about thirty six hours.

This incident ended up being the best thing that happened! When I woke up, I was clear headed for the first time in a very long time. I was done with all that medication. I was even done smoking cigarettes (yet another bad habit I had picked up along the way). And it only got better after that.

Now I have a completely new medical team, and I am currently only on one medication to treat my MS, an infusion called Tysabri. The only other thing I use to medicate myself is cannabis, and it is by far the most effective medicine to manage my MS symptoms. Then, of course, there is the added bonus of the fact that it does not cloud my mind, fatigue me, or worsen any of my other symptoms.

Whole cannon is helps, the biggest thing that has truly saved my life – and has also given me quality of life – is Bikram Yoga.

Starting Bikram Yoga

I had tried Bikram Yoga back in 2011 but didn’t stick with it. When I returned to Chicago in 2016, I started taking drop-in classes here and there. But in 2017 I finally became serious about Bikram Yoga; from that point forward, it has truly healed me in so many ways.

Honestly, I initially went back because I had put on a little weight. Also, my MS had progressed to the point where I couldn’t run anymore, and I had to find and exercise I could do. So I started to go to Bikram three or four times a week. Shortly thereafter, I signed up for unlimited classes.

I used to always go to the back of the room, so I could use the wall to help with my balance. Then I noticed my balance getting better. I didn’t need the wall. I noticed if I went to the front of the room near the mirror, I could see better and it seemed like that was helping me balance even better.

I kept noticing that things were starting to improve. The days I took off from yoga just were becoming my “off days”; I speculate that anyone who has battled a chronic illness knows exactly what these “off days” are like. It became crystal clear to me that Bikram Yoga was my pathway back to a healthy body and renewed spirit. It was and still is my physical therapy, my cognitive therapy, and just plain therapy for the soul.

I saw my neurologist right before I started doing Bikram regularly in 2017. I was super wobbly. My lesions are mainly on my brain, and I also have at least one on my spine. My current doctor is at Northwestern and he is wonderful.

I told my doctor that I started to practice Bikram Yoga, and he said, “If you are going to do that, then I need you to do a cold shower afterwards to cool down. We don’t want you to overheat.”

I said, “Deal! I can do that.”

Six months later, I showed him some pictures that someone had taken of me at Bikram to show my progress.

When he saw the photos, he said, “This is hands down the best things you can be doing for yourself.” I should note that he has not mentioned the cool down shower since.

Listening to My Body

I have heard people say not to mix heat and Multiple Sclerosis, but the most important thing that doctors told me was to listen to my body.

And my body tells me that it feels good to practice Bikram Yoga.

My body is telling me I need that hot room. The hot room allows my muscles to open up; it feels like a safe place for my muscles. In fact, my muscles spasm in the cold, so hot is actually much better for me. I just feel great when I am in that magical room.

As long as I practice consistently, I don’t need an MRI to tell me something is off with my MS, because I am so aware of everything in my body now. If anything is off, I will immediately know. Going to Bikram Yoga consistently is almost an insurance policy that my MS will remain in remission.

Diet

I became vegan in 2012, but when I was overseas in 2015, I added fish again to my diet. So, I guess I’m technically a pescatarian. I think I missed sushi more than anything else, but the omega oils in fish are really good for MS so that’s another added bonus. I also try to cut gluten when I can.

Advice for Others: Multiple Sclerosis and Heat

I feel like I have been through it all over the past ten years. I did everything wrong initially, so I learned the hard way what was right.

Back in 2014, I had a doctor that looked at my MRI and his response to me was, “I wouldn’t have guessed you would be walking in here. I thought you would have needed a device to assist you.”

Now I can do handstands and some days, I can even stick the final part of Standing Head to Knee Pose, the only time in the standing series that the eye gaze changes (no small task for someone plagued with balancing issues!). While cannabis certainly certainly helps my symptoms, I’m fairly certain that Bikram Yoga is more responsible for how well I am presently doing.

When I first got diagnosed, I would never have believed it if someone told me that Bikram Yoga would improve things. But it clearly has. I’m more optimistic than ever that I can keep this condition manageable if I just keep doing what I’m doing. I truly believe that’s the worst days of my MS are behind me. 100 percent!

Because of the lesions and the Tysabri, I need to get scans every six months. Since 2017 (when I started my regular Bikram Yoga practice), my MRIs have not shown any new lesions or any further progression of the disease.

I will talk to anyone about my experience. I really like to share with people the feeling I get from Bikram Yoga. For me, it is euphoric. If that makes me sound like a drug dealer on the corner pushing something, then so be it!

I currently do Bikram every day and even doubles when time permits. I completed 105F’s Teacher Training in the spring of 2019 and am beyond thrilled to be teaching this beautiful series at both 105F yoga studios. I am also a substitute teacher at Be Yoga Andersonville.

When I got my life back in 2016 after returning to the US, so many things seemed to be falling into place, except for my career. But now I get to teach this yoga! Before I got MS, I had really been passionate about a job I had had in the entertainment industry, and since then, I never thought I would love a job so much. But that has all changed. I absolutely LOVE teaching Bikram Yoga , and I look forward to every single class. I pinch myself every time I see a pay check hit my account. I can’t believe that I get to do this for a living, and I hope I get to do it for the rest of my life.