My MS Theory

MS is considered to be an autoimmune disorder.  I believe that all autoimmune disorders are a result of a virus (not bacteria) that has invaded your body for an extended amount of time giving it a chance to cross a barrier and manage to mimic specific cells, tissues, and/or organs in our body.  In the case of MS, I believe some sort of virus crosses the blood brain barrier to enter the central nervous system.  Our immune system is aware of it's presence and in it's attempt to destroy the virus, our nerve cells become collateral damage.  Collateral damage is defined as  "[the] unintentional damage or incidental damage affecting facilities, equipment, or personnel, occurring as a result of military actions directed against targeted enemy forces or facilities. Such damage can occur to friendly, neutral, and even enemy forces.  An autoimmune disorder is caused by the body producing an inappropriate immune response against its own tissues. Sometimes the immune system will cease to recognize one or more of the body's normal constituents as "self" and will create autoantibodies – antibodies that attack its own cells, tissues, and/or organs. This causes inflammation and damage and it leads to autoimmune disorders. In the case of MS, RA (Rheumatoid Arthritis), Chron's disease and other autoimmune diseases, our bodies are being attacked by friendly fire (immune system) in an attempt to get to the enemy (virus).

MS therapies are designed to weaken the immune system or modify the disease.  Tysabri, my current choice of therapy, prevents white blood cells from crossing the blood brain barrier where they attack nerve cells.  This helps to slow the progression of MS.  The downside to this gives the JC virus an opportunity to cross the blood brain barrier as well and cause worse damage than the white blood cells.   This causes a rare infection of the brain called PML (Primary Multifocal Leukoecephalopathy) which I have written about in some of my past postings.  Tysabri is a bit of a double edged sword but a risk that I am willing to take until a cure for MS has been found.  That is why I am so passionate about sharing my world with the world.  I believe a cure for MS can and will be found and the more awareness we raise about MS, the better off we will be in creating a world free of MS.

The human body is a magnificent wonder of many systems designed to collaborate and work together for the common good. Like soldiers in the military the cells in our body do their best to protect human life.  But as we know, nothing or no one is perfect except God who knows the plans that He has for us all.  Whether we have MS, Cancer, ALS or any other disease of the body, put all your trust in God, who causes ALL things to work together for the good of those who love Him.

Patient's Like Me--Tysabri Thread

I was updating my profile on "Patient's Like Me" and I came across this posting that I added over 2 years ago before I decided to start taking Tysabri:

Hi, I am interested in hearing from anyone that is currently receiving Tysabri.  My MS has become very aggressive.  I have developed over 10 lesions in my brain within 7 months of being diagnosed.  I also have 4 lesions in my spinal cord.  I am currently on Copaxone but it's not aggressive enough so my doctor at UC San Francisco wants me to consider Tysabri.  I am trying to get as much info as I can from actual patients.  Please help.  I am a little afraid, at the same time, if I don't do something, I'm sure that I will become more disabled.  Right now my feet are numb and I get sharp, shooting pains all over my body.  I am also very scatter brained and forgetful.  I know a lot of you can relate.  Any info that you have would be greatly appreciated!

Here is a link to the entire thread and some of the responses that I received from other patients:
http://www.patientslikeme.com/forum/ms/topics/19012?post_id=212784#post-212784

Symptoms plus Faith = My MS

Last week I began experiencing a new symptom.  I would get this excruciating jolt of pain on the right side of my face, between my temple and my cheekbone.  When I say jolt, that's the best way to describe it.  Like being hit in the face.  It was gone as quickly as it came but it would happen 2 or 3 times within a few minutes apart.  Like labor pains but in my face.  This went on for 3 days straight.  It started on a Thursday evening between 7:30 p.m. and 7:40 p.m.  I was at home sitting in front of the computer and it happened 3 times within that 10 minute time frame.  The next day it happened again between 1:15 p.m. and 1:20 p.m.  This time I was at work and it happened twice within that 5 minutes.  The following day, I was actually driving and it happened twice between 2:30 and 2:45.

Three days later I had a routine appointment with my neurologist.  I told him about this new symptom and he wanted to know if I was doing anything that would have triggered it.  The only thing I was doing each time it happened was sitting down.  Maybe straining my eyes while on the computer or when I was driving had something to do with it.  He asked if I had considered trying the new drug, Gilenya?  I told him, "I read all the pros and cons and I didn't feel led to change anything at this point."  This drug is still too new for me.  It hasn't even been a year since it was approved by the FDA.  With Tysabri, my current treatment, I receive it once a month by IV.  I am supposed to take a drug holiday every 18 months.  I would stop receiving it for 6 months straight, then go back on for another 18 months.  The first time I did that, I didn't last for 4 months w/o therapy.  I had at least 2 relapses and they lasted for at least a month each time.   By month 5, I was back on my treatment.  My brain scan shortly after that showed new lesions but they were not active (lit up on the MRI films) which led my doctor to believe that I developed these lesions when I was not receiving treatment.  May of this year marked the 12th month since I went back on treatment.  I suggested that we try 12 months on and 3 months off and he agreed.  So I will not get treatment beginning this month through August.

When taking Tysabri, drug holiday's are suggested to help your immune system recover because even though all MS treatments suppress your immune system, Tysabri is a very aggressive form of treatment used especially for those with a more aggressive form of MS.  Anything that suppresses your immune system, whether it be a drug or an illness can be dangerous because you are more susceptible and vulnerable to opportunistic infections.  That's where one of the most dangerous side effects of Tysabri comes into the picture.  "PML".  You can find my posting about "PML" in my archives, titled "Risky Business".

I have talked to several people with MS who are afraid to receive Tysabri treatments because of the risk.  They asked me what was the deciding factor for me to go on this treatment.  From the first day of my diagnosis, I took Copaxone for 6 months.  I had to receive a shot every single day and my condition was getting worse instead of better.  When I went to UCSF ( Univ of San Francisco), Dr Cree suggested Tysabri to respond to the aggressiveness of my MS.  It was a family decision.  We watched the video that I was given and read every pamphlet as well.  The most important thing we did was pray about it.  We had everyone in our family and our close friends praying about this.  Finally, God led me to step out in faith by trusting Him to protect me and go for it. 

Faith is my strongest gift.  For those that don't know God, you will never understand my reason for doing a lot of things.  You will never understand how I know it's God.  You will wonder how do I hear from God?  It's not audible by the way.  It's more of a conscience thing.  I can try to explain these things to you, but without faith, you will not understand.  All I can tell you is to ask God to give you the desire to know Him and have a relationship with Him.  To give you understanding and knowledge so that you can learn how to trust Him.  Without God, I would not have the quality of life that I have to this very day.

Walk MS 2011 Reno/Sparks

We had a wonderful time at the walk this year.  My family, friend's and co-worker's came and showed their support.  The weather was actually perfect for me.  It was overcast but it wasn't cold or too windy.  I didn't have to wear sun glasses or anything.  I couldn't have asked for better weather myself.  I was asked to speak about MS, how it affects me and why I walk for MS. 

 This is the first half of my speech.  Afterwards a lot of people told me that I had them in tears, but in a good way.  I couldn't believe how much it affected everyone.  A few people want me to speak at dinner's and other events.  This is something I have always wanted to do but that doesn't mean it's what God wants for me.  We will see, I will have to pray about it and ask God how He wants to use me. 



Me and my sister's in Christ

My Mom bought a raffle ticket and gave it to me.  I won brunch for 2 at Rapscallion's.  We've never eaten there before but everyone's says that they have great food.



My husband and I

Our team collected over $4000 for the MS Society.  I know the funds will be put to good use and I am so grateful to all who donated and helped our team raise money.

MS Warrior's




MS Walk

I know it has been a while since my last post.  For the past 2 months I have been busy raising funds for the Reno/Sparks MS Walk which is now 2 days away.  My team, the MS Warriors has raised over $2700 which is the most we have raised so far.  I formed this team 3 years ago and this year has been my best year.  We have more people walking, we have raised more money and I have had more fun than ever this year.  When you are a part of something so important and you get to witness everyone's love and support for your cause, it does something amazing to your heart.

My symptoms have been ok.  I believe I'm getting stronger.  The weather in Reno is utterly confusing but I eventually want to start walking more.  I'm not much of an outside person so we will see what happens.  Pray for me.  I really need to start some form of exercise.  I love pilates and it's a good way to strengthen my core muscles so that is what I will do.  I tell myslef that almost every day.  And I actually have the time to do it.  Having the energy is another story. 

I have been asked to speak at the walk.  Our team is the top fundraising team this year.  We have always been a part of the top 3 teams but this year we are number one baby.   I said yes of course.  I am honored but I am also nervous.  As much as I love to talk, it's a different story when I have the undivided attention of a crowd of people.  I will rely on my sense of humor.  I'm supposed to talk for 5 minutes.  Isn't that kind of long?  Well, my husband plans to record my little speech and I promise to post it in a few days.

In the meantime, I gotta finsih getting ready for work.  Sayonara

Awake

It's a calm, quiet night around 11:00 p.m. and I'm already half-way asleep.  I wake up to get a drink of water and go to the bathroom.  Once I get settled back into bed I am unable to get back to sleep.  A familiar sensation on my torso begins to take form.  It feels like something is crawling on me, mainly directly beneath my skin.  Oh no, not again.  I hate it when this happens.  I am unable to get back to sleep until 1:30 in the morning.  Sometimes when this happens, I get up and rub lotion all over my body.  Maybe my skin is too dry.  Other times I drink a few sips of Riesling. 

Wine often helps me settle down and get back to sleep within 30 minutes.  I don't do this often because I don't want to become dependant on any substance to relieve my symptoms. My primary care doctor recently prescribed me some Ambien 5mg.  I was somewhat nervous about adding to my list of meds and I'm skeptical abut sleeping aids because I don't want to become dependent on them or wake up feeling groggy but Ambien supposedly isn't like that.  I took one of the tiny 5 mg pills for the first time a few nights ago and it didn't take me long to get to sleep at all.  The next morning I actually felt great  much to my surprise .

There are different reason's why a person might feel this creepy, crawling sensation on their skin.  Sometimes it happens as a result of withdrawal from a drug like heroin, oxycodone, amphetamines, or alcohol.  It can also be the result of side effects from medications such as Ritalin or Lunesta to name a few.  I recently realized that this is also one of the many symptoms of MS.  I'm not sure why I didn't make that connection at first.



Diagram of nerves beneath your skin

   It's a nerve issue and we have thousands of them branching from our spinal cord to every part of our bodies from head to toe to skin.  I have googled this symptom quite a bit.  I found out that this is a rather common problem for many people.  Stress, anxiety, or lack of sleep can also cause this unwelcome sensation  to happen and it seems to be more of a night time issue for most sufferers.   The first time I had this problem, it went on for 2 consecutive weeks.  I thought I was losing my mind.  It's kind of scary when you can't figure out what your problem is and trying to describe it to someone might make you seem a little crazy or paranoid.  To add insult to injury, one night we were on our way somewhere in the car and it felt like something was crawling in my hair.  This time there really was a spider in my hair.  Aaghh, I was really freaking out and I'm so glad my husband was there to kill it with his bare hands which is typical of him.

The human body is so uniquely amazing at giving us warning signs.  Our God given instincts tell us when something just isn't quite right.  It might be a good idea to let a few weeks pass before going to a doctor but if it goes on for more than a month, I encourage you to get it checked out.  Also, be your own advocate or get someone very close to you to help you research and stay on top of your health issues.  You cannot depend on doctor's to do as good of a job as you can.  No doctor knows you better than you know yourself.  God bless you and take care of you.

Vitamin Savvy

I read a book called "The Vitamin D Solution"by Michael F Holick.  It was extremely interesting.  I encourage people to make sure that their vitamin D levels are within normal range. 

I have included a link to a post from my Keepin It Real blog about what I found to be the most interesting facts about vitamin D:

Keepin It Real: Vitamin D Deficiency: "Vitamin D deficiency is related to autoimmune diseases, depression, osteoporosis, heart disease, cancer, diabetes, chronic pain, Psoriasis, ..."