Living Well

I like to try natural remedies for pain, depression, and anything else associated with mind, body and spirit.  I've tried yoga a few times but some of the poses make me dizzy.  Anything that causes me to bend down or put my head below my waist is a huge problem for me.  I was cleaning my shower the other day and when I stood up after being on my knees for about 15 minutes, I got dizzy.  I'm not sure what that's all about.  Now Pilates is a different story.  I have a video called 10 minute solutions.  There are 5 parts, each 10 minutes long.  I use 3 of them, pilates for your stomach, arms and thighs for a nice 30 minute workout.  Not saying I do it every day or even every other day.  I gotta work on being consistent.

When it comes to my mood, I'm learning a lot about essential oils and the amazing effects they have on our body.  For instance, lavendar is supposed to be good for relieving emotional stress.  I have used lavendar for many things and it does appear to have a calming effect.  I like to burn the oil in a diffuser.  I also like to spray it on my pillow. Today was stressful and my shoulders were tense but after rubbing some lavendar mixed with olive oil on them, my muscles have relaxed and I feel better mentally too. 

Did you know that some essential oils actually have antiviral and antibacterial properties.  I use lavender and tea tree oil for anything pertaining to fungus or bacteria.  I like to use it on my scalp to help fight dandruff which is generally caused by fungus.  If you look at the active ingredients for head and shoulders or just about any dandruff shapmpoo, you will see pyrithione zinc which is an antifungal.  If you want to try a more natural approach, add some tea trea oil and lavendar to your shampoo or hair moisturizer.

As for fatigue, I haven't tried anything for that other than making sure that I get enough sleep.  Sometimes that doesn't make a difference.  We know that MS relatated fatigue also known as lassitude is the most common problem for people with MS.  I just try to rest when I need to and I try not to take on too much. 

Mentally I am very forgetful and sometimes that plays on my emotions.  It can get me down when I can't remember what I want to say or when I forget something that was told to me an hour ago.  I think that's my short term memory.  I believe St John's Wort is supposed to help with memory problems but I have never tried it.  For my memory problems, I excercise my brain by doing puzzles or playing the piano.  I used to play a video game appropriately titled "Brain Games" but after doing that for a few months it got boring.  I have a short attention span.

I like to take vitamins and antioxidants or at least eating the foods that contain them.  I know that certain foods play a role in our physical and emotional well being.  When my family get's sick, we prefer to take zinc and vitamin C instead of over the counter meds.  I like to make my own special teas and yes, they do actually work.  When I was little, my Mom and Grandma would always boil citrus fruits such as oranges, lemons, and grapefruits whenever someone came down with a cold.  It worked very well and I now do it for my family.  We call it vitamin C tea.   It shortens the duration of any cold.  I add ginger and sea salt too.  Add brandy to make a hot toddy and knock that cold out. Of course I only do that for me or my husband.  Green tea is a great antioxidant.  Blueberries are also great antioxidants and I like to add them to my oatmeal. 

I must confess that I love sweets and I drink about a cup of coffee every day too.  My teeth are not as white as they should be.  As a matter of fact, they're not white at all.  They're more like "mother of pearl" if you know what I mean.  I read that if you rub the inside of a banana peel on your teeth for 2 weeks it will lighten the color of your teeth.  Hmmm, I'm not so sure I even want to try this one.  Well actually I did try it once and I didn't like the way it felt.

As for my emotional well being, prayer and reading God's word has always helped me.  Laughter is also something that I swear by.  It makes me feel so dang good.  Tee hee hee.

Praise Report

Yesterday I got the results of my latest MRI.  The doc showed me and my husband a film that had a combination of every MRI that I've had from the beginning to now.  My most recent MRI shows no new abnormalities and that my previous lesions appear to be stable or slightly less pronounced.  Maybe the pain that I was feeling in my brain had nothing to do with lesions forming after all.  That's great news considering that I have been off treatments for over 3 months now.  At this point, I will restart treatments because 4 months appeared to be too long w/o treatment last time. 


I also received an e-mail from a Tysabri coordinator who wants me to speak at their next dinner here in Reno on October 20th.  I will be joined by a neurologist by the name of Vincent F. Macaluso from New York.  He also has MS and Tysabri is his current treatment as well.  I'm looking forward to this and I will be sure to blog all about my experience. 

This Is So Not About Me

You know what they say, "Everything happens for a reason".  I believe having MS is a way for me to learn more about life and see things in a different perspective.  I like to help people understand this disease.  I never asked God "why me" because this is so not about me.  Things happen to people all the time and it really is true that God will never put more on you than you can bear.  He knows what each one of us can handle and He knew that I could handle MS, with Him of course.  So I am on a mission.  I haven't had the opportunity to speak about MS in public since the MS Walk in May.  I signed up to be an advocate through the MS Society and I never heard back from anyone so maybe it wasn't a good fit.  Who knows.  That won't stop me from getting my message out, even if all I do is blog about it.


It's been almost 3 months since I have not received Tysabri.  Honestly, I have been doing wonderful.  Better than I expected.  I haven't had to work from home as often in these past 3 months as usual.  Today I have to get an MRI of my brain before I go back on Tysabri so my neurologist can tell if I have developed any new lesions in the past 3 months.  I can say that I most likely have because I can feel it.  I have mentioned this before.  The pain that I get in my head is different than a headache.  It's a shooting pain that will only last for a few seconds.  Don't you think that if scar tissue is developing in your brain you would be able to feel it?  It's like having little tumors all over your brain.  Lesions are also referred to as tumors or plaques.  I don't think I will ever be able to fully explain it but we'll see what the results of the MRI show.  I will be sure to post something as soon as I find out.


Another thing that I have noticed about myself is that I am constantly clenching my teeth.  I catch myself doing it all the time and I try to relax my jaw.  I will have to do some research about that because I grind my teeth in my sleep which is something that I have always done so I am not sure if the clenching is related to MS or Tysabri or something random.  My short term memory is a little worse.  I am able to talk better now.  I'm not stumbling over my words as much.  That's important since I want to be able to use my voice and talk about MS as much as I can and I do find myself educating the people around me.  I don't mind when people ask me questions about MS.


Please pray for me.  That is the best thing that anyone can do for me or anyone.  God is using me and I hope that my experience will help others with MS realize that no matter what, there is a purpose for their lives.  You do not have to be embarassed about MS.  I want to help family members of those with MS understand that they need to encourage their loved ones struggling from the many head to toe symptoms of MS, even though most of the time you can't tell by looking at them, unless they are in a wheel chair.  I want to help people understand that a person's handicap or illness doesn't have to be obvious.  Don't be narrow minded or shallow.  MS is very difficult to diagnose most of the time because there is a giant list of conditions that mimick MS.  A lot of research is being done and even if we never find a cure, we will be ok.  God is in control.

Immune Health

My neurologist keeps telling me that the worst thing I can do as someone with MS is take measures that boost my immune system.  I used to be serious about natural antioxidants such as vitamin C, zinc, blueberries, pomegranate, Acai berries and the list goes on.  For a while I wondered if I overstimulated my immune system and caused it to backfire on me by attacking my Central Nervous System but I don't really believe that is the case.  I have read information that supports my docs theory about our immune system being the main culprit regarding MS and it's not such a good idea to enhance it.  Especially since the main goal of MS therapy is to suppress the immune system.  On the other hand, I recently read an article in a newsletter for people with MS that states the opposite.  

"Despite the damage the confused immune system may be causing to healthy tissue, it is important for it to still function as the body's system of defense against infectious diseases and cancers.  A well-balanced diet of low-fat foods that are high in fiber and antioxidants has been shown to have beneficial effects on the immune system."  Shared Solutions--Healthy Eating To Boost Your Immune System

My take away from both points is this:  Even though my immune system is attacking me, I still need to take measures to protect myself from free radicals and carcinogens while I am on treatment.  Healthy foods such as avocados, nuts, olive oil, salmon, brown rice and brans can help me to maintain total-body health.  My hope is that while the treatment calms my immune system, diet can address the parts of my body like cells, tissues and other systems that still need defense, while hopefully avoiding the attack on my Central Nervous System.

At the end of the day I know I need to take care of myself and educate myself on a regular basis when it comes to the balancing act of trying to keep MS in check. 

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.