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.

                                                                                                             

New Symptoms

My MS symptoms are somewhat mild.  My number one symptom is fatigue and the majority of people with MS will tell you the same.  This is not just your normal fatigue brought on by not getting enough sleep or after working a long hard day.  This fatigue is called lassitude or MS fatigue. I also experience numbness in my right foot near my toes and body aches from head to toe.  Mentally I have brain fog which is exactly how it sounds.  I have a lot of lesions in my brain and it affects my memory, cognitive skills such as writing and my mood.

Lately I have been noticing sharp pains in my neck and spine.  It feels like my nerves are backfiring and it hurts like hedoubleL.  Thankfully the pain doesn't last very long and it's sporadic.

I know and feel that I am truly blessed.  I have access to treatments that weren't availble 15 years ago.  I used to tell my family and friends that if I had to choose between MS and other diseases such as cancer or lupus or sickle cell anemia, then MS would be my choice.  God knows what He is doing and He has me in His hands.  As long as I stay close to God, I will always be ok.  He gives me strength that causes some people to wonder about me?  People used to say, "I don't know how you do it", and I tell them that it's the God in me.  Apart from Him then MS would probably have me feeling sorry for myself.  But there are too many blessings in my life to focus on this disease and let it have me down all the time.