Day 18 - What is MS?

Happy Halloween Everyone!

We decorated the house today and are in costume as we speak (we are bikers! - yes, not very original, we know). Chris is still taking allergy medication for the hives that are still down both of his arms. He has also developed bruising down one arm, which we think is due to his low platelet level. We are planning on giving the hospital a call tomorrow just to make sure we have nothing to worry about.

Chris is currently at his "Nadir", which means the low point in time between chemotheraphy cycles in which you experience low blood counts. From this point onward his blood counts should be going up.

Recently we have been recieving a bunch of questions from people following our blog that they aren't 100 per cent sure what MS is and how giving Chris a new immune system will help. To be honest, Chris and I both had no idea what multiple sclerosis was when he was first diagnosed. And until things started getting more serious I didn't even really understand the science behind it.
So here is a quick rundown of how it works. Please keep in mind this is just my understanding from reading and talking to doctors so there may be some errors!

What is MS?

Multiple sclerosis (MS) is a disease which progressively injures the nerves of the brain and spinal cord. People without MS have nerve cells that are covered by an intact protective layer known as the myelin sheath. Nerve cells are made up of neurons that have a head called the nucleus and a long strand that is called the axon, which is covered in the myelin sheath. This covering helps to speed electrical signals in the brain. In people with MS, for an unexplained reason, the T-cells (which make up your white blood cells) recognizes the myelin in the brain and spine as a threat to the body and attacks it. This is known as demyelinization. When the myelin sheath thins and breaks down, the, electrical signals can't travel between the neurons.

Although the myelin can rebuild itself, the rate of demyelinization caused by MS is too rapid for it to keep up. The damaged parts of myelin are often called “lesions” or “plaques”.

Basically, you just need to think of a lamp: You have a lightbulb that recieves it signal from a copper wire. The wire is wrapped with plastic to protect it. If you start losing parts of the plastic the wire will start to rust and eventually the light won't be able to turn on.

This demyelinization can cause a wide range of symptoms such as:
- muscle stiffness or spasms
- cognitive problems (e.g., memory loss)
- dizziness and sensations of spinning
- mental health problems (e.g., depression)
- extreme tiredness
- difficulty walking
- headache
- paralysis
- bladder problems
- bowel problems
- hearing loss
- itching
- numbness and tingling
- pain
- seizures
- speech and swallowing problems
- shaking
- vision problems

MS has its most striking effect on motor and sensory neurons, which generally have long axons carrying information between the brain, spinal cord, and the rest of the body. Because these axons are longer, they have a greater need for the insulation myelin provides and are therefore most affected by its destruction.


What causes MS?
Nobody knows for sure what causes MS, but most scientists agree that it involves a combination of environmental and genetic factors. Different factors that are linked to MS include:

- Cold Climates/ Lack of Vitamin D: MS occurs most commonly in those living in northern climates. Apparently, where you spend the first 15 years of your life plays a role in your odds of developing MS. Canadians have one of the highest rates of multiple sclerosis in the world. (see map)

- Infection: Researchers believe that many autoimmune diseases are provoked by some kind of infection that may affect people differently who have a certain genetic makeup. The infection can trick your body's immune system into attacking your own tissues, even after the infection has gone.

- Family history: While scientisits have determined that there is no MS gene, research has shown that you are more likely to get MS if someone in your family has it.

 So there is my little (or not so little) explanation of MS. Hope it makes sense!

Day 8 - How did we get here?

I am starting to get concerned that this blog is turning more into updates about Chris' hair than his transplant. Chris decided to change his hair for the third time today and had me buzz it all off. And yes, we have included yet another photo of Chris' hair. We promise to try and take more interesting photos in the future.

Since today is just another rest day, we thought we would take this opportunity to go back a little bit and explain why Chris made the decision to do this procedure. We have recieved a lot of support from friends and family, but one of the common questions is, "Isn't there anything else you could have tried instead?"

In short, not really.

Chris was first diagnosed with  relapse remitting multiple sclerosis in February 2007. There are four kinds of MS: relapse-remitting, primary-progressive, secondary-progressive and progressive-relapsing. Relapse-remitting means that you have a series of relapses when symptoms get worse and remission when symptoms improve. At the time of diagnosis, most people have relapse-remitting. However, more than half will eventually develop secondary-progressive. Secondary progressive is when you have relapses, but you stop having periods of remission and experience a slow but steady worsening of symptoms.

As early as January 2005, Chris had gone to the doctor on multiple occassions due to weakness and numbness in his arm and legs. Finally he was evaluated by a neurologist in December 2006 when the entire left side of his body went numb, including his face that appeared to be drooping on the one side. She sent him to get an MRI and it came back with multiple lesions on his brain, the main indicator for multiple sclerosis. Chris started taking a drug called Rebif that required injections 3 times a week. The drug is not a cure, but it reduces the number of relapses and  slows down the progression of the disease. When Chris had a relapses they would prescibe him high-dose steroids. The combinations of the Rebif and steroids seemed to be very effective at first.

 From April 2007 to September 2009, Chris had approximately 3 relapses affecting primarily his left side of his body in his leg, arm and face. We also noticed a slight decline in his balance and memory. However, in September 2009, while Chris was working for three weeks in Nunavut, he had a relapse that affected his vision and balance. In February 2010, he had a major relapse that affected his leg and made it difficult for him to walk even short distances. When he took steroids, it took over 2 weeks for him to walk normally again. Prior to this, Chris would notice a major improvement within 48 hours. A month later, Chris had another relapse that affected his left leg. It was so bad at some points that he needed help getting from the car to the front door. This time it took almost a month before Chris started to feel any big improvements.

We also noticed over the winter that Chris was never getting back to 100 per cent. Even after a relapse, Chris could no longer run or skate and his memory and balance were continuing to get worse. When we met with his neurologist, she confirmed what we feared. Chris was nolonger responding to his medication and he had started to develop Secondary-Progressive MS. We were told that unless we took action, Chris may lose his ability to walk without an aid.

We had two options:
- A new drug called Tysabri. It had shown to be really effective at reducing relapses in MS patients, but you risked contracting a brain infection called PML (for which there is no cure and results in death). The risk for this infection increases the longer you are on it, so Chris would only be able to take if for 2 years.

- The Stem cell transplant, which also had a risk of death and serious complications.

It wasn't exactly an easy decision. We were referred by Chris' current doctor, to a hematologist, who explained the entire procedure for us. We did a TON of research. We searched the Internet and journal articles for everything there was written. We even read patients' blogs (one of the main reason why we are writing this blog) to understand why they decided to pick a certain treatment. I even went so far as to make a chart with the pros and cons of all the options we could find. In the end, the stem cell transplant, despite it being the most dangerous, was the only option that gave us an end. If this could really stop the progression as it had in other patients, then it would mean an end to medicatons, an end to the relapses and an end to the worrying.

Since the stem cell transplant is still an experimental treatment, Chris still needed to be accepted. Luckily in June after we met with another neurologist that specialized in treating MS patients, he determined that Chris was an ideal candidate.

So this brings us to now. We are meeting with a bunch of Chris' doctors again tomorrow to see how he is progressing. And of course, we will let you all know.