Boston Advocate Conference

I want to thank Biogen Idec for inviting me to attend the 2011 MS Advocate Conference in Boston, MA.  The conference far exceeded my expectations. 

Thursday morning we woke up at 3:30 a.m. and headed to the airport around 5:00 a.m.  Our flight from Reno left on schedule at 6:00 a.m. and went very smooth.  We had a connecting flight from Denver which was delayed for 1 hour because it was snowing and the plane had to be de-iced.  We arrived in Boston an hour later than expected but there was a driver there to meet us at the airport as expected.  As a matter of fact there were 5 other people on the same flight that were headed to the same conference. 
A nice couple from Denver was actually across the aisle from us on the plane but we didn't know their destination until we were picked up at the airport together.  There was also a woman from Sacramento that I had previously met via e-mail.  I knew she would be at the conference but we didn't realize we were on the same flight.

 

We checked into the Boston Renaissance Waterfront Hotel.  Our room was on the 18th floor and we had an amazing view of the city and the sea.  After calling our family to let them know we made it, we freshened up and headed to the welcome dinner and registration. 

Dinner was served buffet style and there was also an open bar with red or white wine and several types of beer.  We mingled with a lot of different people from all over the country.  There were people from Kentucky, San Francisco, Oklahoma, etc...   Some were accompanied by their spouses and or caregivers and others were alone.  We were introduced to the Biogen Idec staff, those responsible for coordinating the conference and they did a fantastic job.  I'd say we were well taken care of.

After dinner we headed to our room to turn in for the night.  We were pretty exhausted since we had already been up since 3 a.m. (pacific time) and with the time difference, we lost 3 hours.  Besides that, the next day was set to begin with breakfast at 7:00 and the first session at 8:00.  I spent most of the night watching the news reports about how bad the wind was on the west coast.  The wind was reported to be pretty strong in Reno so we called the family to make sure they were all ok.  Everyone was fine.  My Mother and Grandma were getting ready to take the girls to see a movie so we said our good nights.  You know what they say, "What happens with Grandma stays with Grandma."   

The following morning, the alarm went off at 6:30 and it was so hard to get up.  I felt like I had just went to sleep.  Ugh!!  I didn't make it down for breakfast until 7:45.  I had just enough time to grab a quick bite before a musical bell began to ring.  There was a man walking around with something that looked like a xylophone made out of steel to signal the end of breakfast and time to head to the first general session.  I would say there were about 125 advocates.  The session started with a briefing from the CEO of Biogen Idec.  That was followed by information regarding advocate related expectations and guidelines.  Afterwards we broke out into smaller groups for a session on Health Care Reform and how it relates to the MS community.  There were 2 Wellness Workshop's on nutrition or relaxation.  We attended the one on nutrition where we learned how to make 2 healthy snacks.  They even gave us some cool aprons to take home.  We returned to our room to find a gift.  It was an ipod docking station and a picture frame.  Totally unexpected and very much appreciated.  I'm going to re gift the docking station and give it to the girls for Christmas.  Yes, I am a proud re-gifter.  As long as I don't give it back to the giver, I'm doing good.

Later that evening we had dinner and cocktails (wine again).  The food was amazing.  This pine nut and bleu cheese salad was really tasty.   For the main course I had Salmon w/white beans and a creamy sauce.  Paul had braised pork, yummy!  For dessert we were served the best bread pudding I ever had.  Paul doesn't like bread pudding but this one was truly gourmet and we both ate every drop.  The cooks for this event were wonderful and everything they served was great from breakfast, lunch dinner and dessert.  I know we gained at least 5 pounds.  Lord knows I could use it.



I'm tired of playing nice with
my relapsing MS





MS is NOT for the WEAK



During dinner there was a photo booth set up where we could take individual pictures.  Check us out.  This is an example of the new Tysabri brochures.  Hopefully they will choose our pics to be the face of the fight against MS.

The following and final day, we had training on how to be an effective speaker.  I learned to view public speaking as public thinking.  When I lose focus or find myself searching for a word or phrase, instead of filling gaps of silence with umm or uhhh, it's ok to pause and  think in front of my audience to help me regain my focus.  I can't wait for my next opportunity to speak and apply what I learned.  Hopefully sooner than later, lest I forget everything I learned.

On a scale of 1 to 10, I rate the conference a perfect 10 and I'm grateful for the opportunity.







Countdown To Boston

Today is Monday and in a few days my husband and I will be going to the training conference for MS advocates in Boston, MA.  My husband is my care partner and also my best friend.  We have had a lot of "firsts" together, including our trip to the east coast. We're staying at the Renaissance Boston Waterfront Hotel.  We may try to venture out a little between meetings or maybe we just relax as much as possible since the 3 hour time difference will affect us.

From Boston we will fly to New Jersey to visit my sister-in-law for one day, maybe go to Central Park for a bit of sightseeing.  This will be my first time meeting her in person even though we communicate a lot thanks to Facebook.  My husband hasn't seen her in a very long time so we are really looking forward to hanging out with her and her husband.

Stay tuned for updates about our east coast journey.....

Healthcare - Conspiracy in the Biggest Little City

     Having MS has shown me a side of health care that I never thought I'd see. The world of Neurology.  My first neurologist is very good in the MS world but I'm afraid that when it comes to the human element, his people skills are not good at all.  I will refer to him as Dr Terrorist. When I first started seeing Dr Terrorist it took me a while to catch on to his rude behavior.  I would chalk it up to a bad day because he wasn't always that way.  During discussions with other MS patients, at least 90% of them always had a very terrified expression when I would mention his name.  Their experiences with him were way too much for them to handle and it didn't take long for them to look for someone else. 

     Then the day came when I couldn't take it anymore.  I cannot truly remember specifically why I left, it was a series of things regarding his behavior.  He was just too disrespectful.

     The next neurologist that I chose didn't know much about MS at all.  He was more of the psychologist type.  Let's call him Dr Shrink.  I didn't do my homework and I assumed that all neurologists would know how to treat MS.    That's when I recognized that neurology has many, many sub fields and when I think about it, it makes perfect sense.  MS affects our central nervous system and anything that's central is usually pretty complicated.  I relate the central nervous system to a computer.  Dr Shrink was great because he really did care.  I was at least able to discuss my concerns with a doc who would listen.  Since he didn't know much about MS, he is the one that sent me to UCSF where I was exposed to even more neurologists. 

At UCSF (Univ. of California San Francisco)I met another type of neurologist.  One who specializes in MS in African-Americans.  I shall call him Dr Afro/MS.  If you follow my blog then you have read my post about this.  Dr Afro/MS is the one who suggested a more aggressive approach to my treatment which is my current treatment, Tysabri.  Now, the funny part about this is that Dr Terrorist and Dr Afro/MS are very good friends and colleagues.  Soooo, I eventually ended up going back to Dr Terrorist because he really knows his MS and I needed a local doctor that I didn't have to educate about my condition.  Plus that gave me access to Dr Afro/MS without having to travel to San Francisco.  It seemed like a good idea at the time.

     For the past 3 years, I handled Dr Terrorist pretty well because I didn't have to see him very often.  Recenly Dr Terrorist hung up on me twice for no reason.  I had an appointment scheduled with him and I called to find out if it was really necessary for me to be seen since I had just saw him a month prior and I was doing very well.  I will admit that I am very forgetful at times.  He told me to just come in, but then he hung up.  He never answered my question, and he didn't say bye.  So I call him back and said, "I think we got disconnected somehow."  Once again with no explanation he tells me to come in and hangs up.  I know that if it was important he would've told me.  You hang up on me once, shame on you, you hang up on me twice, shame on me.  There wasn't about to be a 3rd time.   This was the final straw of disrespect.  My husband was ready to pay him a visit and trust me, in this visit Dr Terrorist would become Dr Humble and would not have the upper hand.  I think my husband just wanted to teach him a thing or two about respect.  Having MS is hard enough without being treated like a loser by the one whom you depend on to manage your condition.

     I attempted to schedule an appointment with another neurologist.  The first group of neurologists that I contacted had a scheduler who wanted to know who reffered me.  I told her that I referred myself and that I was looking for a new neurologist.  That's when she informed me that they do not take previous patients of Dr Terrorist because apparently he does all of their hospital calls.  What does that have to do with me? Whatever happened to patients rights?  This is an entire group of neurologists.  Can they really refuse to see a patient based on these grounds?  Now I'm very frustrated and sad and mad and at that moment I just burst out into tears.  That's when I realized that there was a "Conspiracy in the Biggest Little City."  That only left about 2 or 3 neurologists in the Reno/Sparks area to choose from that are familiar with MS.  First I prayed, then I contacted the TOUCH program.  This is the program that every doctor and patient must be registered with in order to prescribe or receive Tysabri due to the high risk associated with this treatment.  I reported Dr Terrorist then requested their assistance finding a new neurologist in my city. 

     In the meantime, God was working on a plan.  I get teary eyed just thinking about how this all went down.  You see, by this time I had a good relationship with a well known coordinator who actually helped me become an MS advocate.  How appropriate right?  Well at my first speech last month, the coordinator introduced me to a local neurologist who agreed to see me.  I will call her Dr Savior.  She was also good friends with the guest neurologist at the dinner.  This guest neurologist from New York shed some light on MS that I had never heard before.  I consider him to be an ally because he knows all 3 sides of the fence:  doctor, patient and treatment.  He has MS and is also on the same treatment, you guessed it Tysabri.  Do you see how God worked that all out?  Remember earlier I mentioned that the first thing I did after breaking down in tears was pray.  What are the odds of me ending up as a speaker at a dinner where I would not only meet Dr Savior but also be introduced to a neurologist who was also a patient, Dr Ally.  And let's not forget the coordinator.  We were all in the same room at the same time and I didn't even get a picture.

     I had my first appointment with Dr Savior 2 weeks ago.  She understood everything that I was going through, including the "Conspiracy in the Biggest Little City."  She doesn't have to rely on any of these other neurologists when it comes to her patients.  It turns out that Dr Terrorist didn't discriminate when it came to his behavior.  He is this way with other doctors and anyone else who comes in  contact with him.  So you mean to tell me that every body is scared of him, not just his patients?  He should be retiring soon.

    I left my appointment with Dr Savior feeling so liberated and I cried but this time it was tears of joy.  I didn't realize the level of anxiety that I had until it was all over.   Thank you Lord for ordering my steps and using people to answer my prayers and bless me.

Stratify-2 Clinical Trial

Biogen Idec, the makers of Tysabri has developed a blood test that measures antibodies to JCV.  About 70 to 90 percent of the people in the world have JCV in their system but it's only dangerous when your immune system is weak or suppressed.    The purpose of Stratify-2 is to understand whether an MS patient who has antibodies to JCV is at higher or lower risk of developing PML.  Details about JCV and PML can be found in my previous posts such as Risky Business or My MS Theory.

Blood samples were collected from at least 8000 patients in the US with MS.  This includes me.  I am participating in this clinical trial and my blood was drawn last year and again today.  The study lasts for 2 years so I have one more draw next year to finish this study.  My blood is sent to a lab for testing and it will be kept in long term storage for future JCV research or until destroyed by Biogen idec.  Future testing related to JCV research may be conducted on my samples.  Last year I discovered that I tested positive for the antibodies to JCV.  The pros and cons of taking Tysabri were considered when I chose Tysabri for my MS therapy.  The risks were weighed before I knew that this virus was dormant in my system.  It doesn't change anything for me.

I will continue to keep my doctor informed of any new or worsening symptoms and evaluate things as they come.  Tysabri has changed my quality of life for the better.  I took a leap of faith and I know that God did not give me a spirit of fear but power, love and a sound mind.  What that means for me is to live is Christ and to die is gain.  My purpose in life is to bring glory to God the best way that I know how.  I will always pray for His guidance, knowledge and wisdom in everything that I do.  My decision to choose Tysabri was with much prayer and acknowledgement of God's purpose for me.  He cannot use me if I am unable to have life and have it abundantly.  All my faith is in Him and Him alone.  When I die, it will not be when or how I choose but I trust God to keep me and sustain me for as long as He sees fit.  Then I will go to be with him forever in eternity.

Dinner and a Speech

On 10/20/11 I spoke at an MS Seminar called: Finding the right treatment for you.  My speech went very well.  I wasn’t as nervous as I thought I would be.  There were about 40 people there.  It was located downtown near the Truckee river and the setting was very nice.  I didn’t get to take pics or video.  It was pretty crowded in there.  The food was about 8 on a scale of 1 to 10.  Not only were my husband and daughter’s there with me but my mother and grandma came down from Hawthorne just to be there to support me.  The response to my speech was good.  People thanked me for sharing my story.  I just hope that people felt inspired and encouraged to take control of their MS.  I don’t like to see people doing bad when they can be doing so much better.  Through my personal story, I want people to see that they don’t have to live in fear of their choices but they do need to be wise. 

The guest speaker was a neurologist named Vincent Macaluso and I see him as a genius in the MS world.  It was good to hear things from a doctor/patient perspective.  He said that he enjoyed hearing my speech.  He has MS and is also on Tysabri.  He claims that there really is only 1 type of MS.  MS was split into 4 types in the 1860’s before they had the technology that we have.  He believes that 1 of the 4 types is not MS at all but more like Transverse Myelitis based on some brain scans that he studied and showed us.  I believe he was referring to PRMS-Primary Relapsing MS which only about 5% of people with MS are considered to have this type.  He did say there should be more studies on that.

Based on his experience with his patient’s, he believes that Tysabri is for anyone with MS as long as their immune system can handle it.  If a person’s immune system is already weak then it would not be wise to use a treatment as aggressive as Tysabri.  Not all lesions are seen on an MRI.  When you consider the size of a nerve, it takes a lot of inflammation in a concentrated area to see a lesion on an MRI.  That makes it difficult to really get a true count of lesions in your CNS.  Not only that but some people with lesions don’t necessarily have MS, such as the elderly.  I learned so much from his speech and he is currently writing a book about his research and studies.  I definitely plan to buy it.  Everything he said made perfect sense to me.  It was like he was teaching a class and I enjoyed it. 

Advocating for MS



I am finally on my way to becoming an MS advocate.  Biogen Idec, the company that developed Tysabri, my current MS therapy, has recruited me as a speaker.  This is very exciting for me.  If you follow my blog then you know that I have been trying to become an advocate for people with Multiple Sclerosis.  I will be expected to talk about how MS affects me and why I chose Tysabri for my MS therapy.  As I mentioned before, I am supposed to speak at an upcoming dinner in October here in Reno.  I also received an invitation to a conference in Boston for MS advocates.  Boston?  That's cool but it will be in December so you know it's going to be extremely cold.  I plan to go and I'm really looking foward to learning how to be a great speaker.  

My mission is to motivate and encourage people to stand strong and take control of their health, no matter what your condition is.  Doctors don't know everything and it's very important for you to do your own research.  Write down any issues, concerns or symptoms that you have before each doctor appointment.  

I also want to be involved in government relations.  Advocating for positive changes, better healthcare and research policies. Caregivers also need more resources and tools to care for their loved ones with MS.

I want my MS diagnosis to count and make a difference in the lives of everyone with MS by learning as much as I can and sharing it with everyone however I can. 

Please ask me anything that you want to know about me and or MS.   You can either comment here or e-mail me at chocklitgirl@gmail.com.

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.

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, ..."

A Day in The Life

   Today was a good day.  I had my Tysabri infusion which I get every month for MS therapy.  It's actually a good time for me to just unwind and chill for 2.5 hours.  I sit in a recliner and I usually bring a book or my journal.  I always do my therapy first thing in the morning before I go to work from 8:30 to 10:45 or so.  It seems like the months fly by and before I know it, it's time to go back.  I have a great relationship with my nurse.  We spend the whole time talking about our families and our back ground.  She is Philipino and she lived in Nigeria for 6 years.  Her father was in the military so they traveled a lot.  She has been all over the globe.  My new nickname for her is "The Globetrotter".  I have never been out of this country, which is fine with me.  I would love to go to Paris or Tuscanny but I'm just as satisfied watching Under the Tuscan Sun or the travel channel.  I'm more interested in seeing the places than actually being there.
 
     After the infusion today I had a giant burst of energy and my day at work went very well.  I usually get pretty tired between 11:00 and 2:00 but not today.  By 5:00, I was still feeling great.  It's not always like that.  Sometimes it's just the opposite.  I was a littlle shaky after my therapy today.  I need to make sure that I stay hydrated.  Once I got some food in my system, that went away.  I am so grateful for this treatment.  It really makes a difference in my quality of life.  God is always blessing me left and right.  To be able to work and to still have a job is a major deal right now that I do not take for granted.  I really love my job and having MS does not prevent me from being able to keep up and do a good job. I don't even want to imagine what my life would be like if it wasn't for God's favor.  I know without a doubt that I'm doing as well as I am because of Him.  I feel like I can do anything, and most of the time, I do exactly that.

Word Fishing

I learned a new term used a lot in the MS world.  It's nice to see that we have a name for the times when we draw a complete blank on simple words.  I talk a lot so for me it seems like every 3 words get hung up in my head and I'm trying to figure out what to say or at least use a synonym.  I am not very good at explaining things.  God has taught me so much about myself since my MS diagnosis.  He taught me how to slow down a bit and not to bite off more than I can chew or put too much on my plate.  Anyways, I haven't been able to master the "tongue".  It's a constant battle for me.  I have gotten better though since my attention span is so short.  I thought I was just an amazing multi-tasker.  I start one task in the kitchen, walk into a room and see something else that needs my immediate attention.  Then the phone rings and it's my mom.  She uses me to talk to her on the phone because she gets her house cleaned without even realizing it.  Then she hangs up on me.  Then I go back to the kitchen and I have now forgot what I was doing. If multi-tasking means starting all these little tasks and not accomplishing anything then clearly I am an amazing multi-tasker.  So far today I started getting ready for work, then I decided to make some coffee, now I am editing this blog while I wait for my coffee to brew.  Truth be told, I do this every single morning and I end up forgetting to wake up my daughters to get ready for school.  On that note, I gotta go.  I have 2 minutes before I have to wake them up.

New Symptoms pt. 2

Last night I experienced a new symptom.  I was sitting in bed and I noticed this tingling sensation in my forearms and hands.  It went on for about 20 minutes.  It felt like they were asleep but really it's what happens before you go numb.  My feet started out the same way in the beginning.  Since this sensation is in my arms, that means that I must have new lesions in my spinal cord near the nerves that affect my arms.  I don't know. Since I'm on Tysabri, I'm supposed to contact my neurologist anytime I experience new or worsening symptoms.  I cannot take any other disease modifying drug or steroids for 6 months after stopping Tysabri.  Supposedly that's how long it stays in your system.

 I was explaining to a friend that MS affects both your brain and spinal cord and that's why I experience such a wide range of symptoms.  She didn't realize this and she asked me if I worry about my future.  Yeah, maybe sometimes I find myself thinking ahead but I don't worry about the future because tomorrow isn't promised to me or anyone else.  I'm finding out that a lot of people, including my friends don't know much about MS at all.  They seem to get it confused with Muscular Dystrophy, another debilitating disease except it can be fatal.  MS is rarely fatal. 

I see that my thoughts of becoming an MS activist need to be put into action.  I would like to speak to others about MS.  I actually enjoy answering people's questions about my condition.  As long as people want to know, then I don't mind telling them.  I guess I better get started on finding out what my next step should be because I am very serious about this.  I do as much research as I can and that's another thing.  People don't feel like they have the time to research their situations but I strongly encourage it.  Whether you have MS or any other condition, take the time to educate yourself as much as you possibly can.

Risky Business

Tysabri is my current MS therapy.  As an African American MS tends to be more aggressive for us so we must be equally aggressive with our treatment.  Tysabri is the most aggressive treatment that I am aware of.  Since it is so aggressive, there is a down side of course.  With it comes the risk of developing a fatal brain disorder called PML caused by JC Virus or JCV. 

JC Virus was first isolated from the brain of a person suffering from Hodgkin's disease & PML .  PML tissue contains virus-like particles in the nuclei of abnormal oligodendrocytes, which is the pathognomonic cell of the disease.  JCV will only grow in a very restricted range of cells, mainly in the brain.  JCV is known as a DNA virus that maintains a latent infection in the body which can be reactivated from time to time.  The oligodendrocytes in the peripheral zone surrounding an area of demyelination are grossly abnormal.  The nuclei of abnormal oligodendrocytes are packed with JCV.  Typically, PML evolves gradually, with impairment of mental function and disturbance of speech and vision.  Movement may also be affected.  The disease then progresses rapidly and patient is severely disabled, eventually becoming demented, blind, paralyzed and finally, coma and death.

Antibodies of JC virus in the Cerebral Spinal Fluid (CSF) is rare but if detected, it suggests active multiplication of JCV in the Central Nervous System (CNS).  Cytarbine is an anti-viral drug that has proven to be somewhat effective against PML.  Out of 8 cases, long term improvement was only seen in 2 cases.  Another case had a dramatic response within 24 hours but was not maintained.  Rapid progression was halted in 1 case but the neurological damage was severe.  The other 4 cases did not show any improvement.

Our immune system routinely keeps the virus in check.  Anyone with a weak immune system run the risk of developing PML.  Life is risky every day.  I am too blessed to be stressed.