Sunday, January 30, 2011

African Americans w/MS

     I live in Reno, NV but I have traveled to San Francisco a few times during the first year of my diagnosis.  My doctor sent me to the University of San Francisco California to see other neurologists who specialize in Multiple Sclerosis.  When you think of neurology, you don't realize that there are so many branches and sub specialties but it makes sense when you see all the nerves that extend from the spinal cord.  Then on top of that, there are different types of MS specialists.  I ended up being blessed with a neurologist that specializes in MS in African Americans, Dr Bruce Cree.  He is the best neurologist in his field.  My local doctor, Dr George Bigley is one of the best MS doctors in the world and works closely with Dr Cree.  Even though he wasn't the one that referred me to Dr Cree, it just all came together that way which I see as divine intervention.

    African Americans are 50% less likely to develop MS than Caucasians.  With that being said, the effect of the disease tends to be more aggressive in African Americans.  When I say African Americans, this is not to be confused with Africans, those of us that were actually born raised and live in Africa.  The geographical location plays a major role.  MS is practically non existent in Africa, but for those of us that live in the northern hemisphere aka America it's more common.  I  believe the difference between Afro-Americans and Africans has something to do with a genetic factor when it comes to MS.  Those of us in America tend to be combined with other races.  I have Cherokee Indian in my bloodline and my girls are 1/4 Hispanic.  My husband and I participated in a genetic study at UCSF.  They needed someone w/MS and someone w/o MS but were African American or mixed with African American which describes me and my husband.  They took like 6 vials of blood from each of us and we had to fill out a long questionnaire about our family tree medical history.

  People with MS tend to be vitamin D deficient.   African Americans have to spend 2 times longer in the sun than Caucasians to make the same amount of vitamin D due to the melanin in our skin, which acts as a natural sun screen.  This could be why MS is more aggressive for us black folks.  We don't get enough vitamin D because we typically do not prefer to spend as much time in the sun as white people.

   The cause of MS is very much a mystery, just like the different effect that it has on black and white people. Whites are 50% more likely to develop this mysterious autoimmune disease but it's 50% more aggressive in black people.  Only God knows for sure and I have decided to leave MS in His hands and trust Him to sustain me and He does just that.

Saturday, January 22, 2011

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.

Friday, January 7, 2011

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.

Saturday, January 1, 2011

Risky Business

TYSABRITysabri 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.