Field Guide: Chapter 5 I hope you dance

I forgot what chapter I am on, but basically at this point you are probably already over-saturated with information from the internet, your doctor, well meaning family and friend, but most of all you are scared.
I am scared.  I don't know what or who I will be in a year. Unfortunately this illness changes you in all aspects of your life.  You have to rearrange your goals and expectations.  I have had to do a lot of rearranging.  My abilities as a nurse has changed dramatically.  My abilities as a mother have changed dramatically.  My abilities as a productive citizen of society have changed dramatically.  
I don't know where I will be at this time next year.  My hope is that I will be no worse than I am today.  My philosophy on life has always been "if this is the worst thing that happens to me today, then it will be a good day". 
I am ready for all the good days to come, but how do you prepare yourself for the bad days.  I am not sure you can.  I believe that a positive outlook is a much better approach than being pessimistic.  How can you enjoy the things that you CAN do, if you are dwelling on the things that you can't?
Being scared is okay as long as it does not take over your life.  Have faith.  Have Hope.  Educate yourself.  But most of all, live each day to the fullest, that way when you look back you can say, MS did not get the best of me.  "I hope you dance."


http://www.youtube.com/watch?v=RV-Z1YwaOiw

Tired part deux

I went to my appointment at the MS clinic on Thursday.  It was with the research department.  They did another MRI, another Neuro test and another cognitive/motor skills test.  My disability 3 months ago was rated at a 3, now it's rated at a 4.  In this case more is not better.  The lower the number the less disability you have.

I have to say that this is somewhat disheartening.  I am hoping that the next time I meet with them, in 3 months, that I have an improvement in my score.  They say it can take some people months to fully recover from a relapse, hoping that this will be my case.

The research lady, who is very nice and makes me laugh, told me that her and the MRI person (don't know what their official title is) were commenting on the fact that I am still working. She told me that people with less disability than I have are applying for social security. Some days I feel like that should be me, but other days I think about the thought of not being a productive member of society would be devastating to my psyche. I have a feeling that I will be crossing that bridge soon enough so better not dwell on it.

I have noticed that it is harder for me to type with my left hand.  I have to concentrate or my pinky and ring finger don't quite cooperate like I want them to.  It's funny the little things you start to notice.

Well enough mellow-drama for one night.  

Trust in the LORD with all your heart and lean not on your own understanding. ~Proverbs 3:5

Chapter 4: Other types of MS

Well I am not very familiar with the 3 other types of MS, so I just will briefly touch on them.
Primary Progressive MS (PPMS) is when you basically  have no break in the disease process or very brief periods free from exacerbations.  
Secondary Progressive MS (SPMS) initially begins as RRMS, but then the disease process begins to worsen with the person declining neurologically with no or very brief periods of some sort of recuperation. 
Progressive Relapsing MS (PRMS) is very rare, but extremely debilitating.  Think of a straight slope down hill, no bumps in the road or stop signs.  Just a straight decline.
There are very few medications to treat these 3 forms other than guess work.  The CNP in my doc's office says they really just throw some medications that have had some sort of good effect on a few people, but really it is more a hopeful venture than not.  Now remember, that I am only writing this based on my understanding so PLEASE do not take this as anything but what it is intended.  PLEASE inform yourself through your own research.  There are very helpful links at the top of my home page.
The other thing that you should take into consideration is that everyone is unique.  Just because someone has the same illness as you does not necessarily mean that you are going to follow their same path.  Our body chemistry is variable which is why some do better on medications than others.  So no matter how bleak things may look when you first get your diagnosis, just know that no one can predict your outcome.  
I believe that people tend to do better when they are hopeful and optimistic.  It's hard to  imagine that, especially in the initial stages, but you can not let yourself fall into the pit of despair.  Life still goes on, it will just have a few more challenges.  It's also okay to grieve. Your life has changed.  You will never be that person that you were before.  Who knows, you may even be better now.  Living life to the fullest has now taken on a new meaning.


http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

Field Guide: Chapter 3 RRMS

Okay, so now you have a slight upswing in knowledge in kinda sort of what this MS thing is, but do you know that there are 4 different types that you can have.  Which one is you?????

The most common type is relapsing-remitting MS (RRMS).  Relapsing-remitting MS is characterized by flare-ups with a period of remission where you come back to normal or as near normal as you can ever be.  Some people go years without an exacerbation (flare-up) while others have more frequent exacerbations.  

Me, I happen to be the more frequent type.  When I ask the Doc why, there is no explanation.  

I suspect that RRMS is the cause for the my aunt's cousin's brother-in-law has MS and is doing just spiffy!!  Chances are they are one of the luckier people with RRMS who either have their relapses controlled with medication or by happenstance. So you see, it is possible that there is a group of people who have MS who are doing well.  Could be the medication is making a big difference in the frequency of exacerbations or maybe they were caught in the very early stages.

My Doc says that the number of lesions does not necessarily reflect the degree of disability in RRMS.  It depends on the location of the lesion.  This is why it is so unpredictable.

Well, that's all for today folks.  My brain is working overtime.  I start my next semester of school this Monday.  Yay (cough cough sarcasm).

http://www.youtube.com/watch?v=4xyQ5jBJx5g

Field Guide: Chapter 2

So now you know you have MS, but what exactly is MS.  You probably have figured out that it has something to do with the nerves and the brain, hence the neurologist. The following is based on my understanding of MS through the research I have done.  I encourage you to visit the links on this blog to further your understanding.  I am not a physician and I do not play one on T.V.  Knowledge is power, your research may yield a different perspective.
MS stands for Multiple Sclerosis, meaning many scars.  These scars are called lesions when they are seen on a MRI machine.  What causes these scars is still a source of great debate, which is why there is no cure yet.  These scars are seen in the central nervous system which consist of the brain, brain stem and spinal cord.
The most popular theory is that MS is caused by an over active immune system.  Something has triggered your body to see the myelin sheath (the nerves of the central nervous system protective cover) as foreign.  The protein in myelin is essential for the transmission of nerve impulses.  Without this protein, signals are not reaching its destination so to speak, which is what causes difficulty walking, numbness and tingling along with other neurological impairments.
 In the beginning stages of MS, your body has the ability to repair the myelin if not too severely damaged which is why it is so hard to detect on an MRI. But after repetitive damage to the same area, the body loses its ability to repair leading to scarring of the area, this is when it becomes harder to recover from relapses.  At this point you are left with permanent deficits, for example, foot drop.
There are other theories out there, but the thing that every theory has in common as of this point, is no one knows why MS happens or what triggers it.  If they figure that out, then it would help them figure out how to cure it.
That's all for now folks, this chickadee is a little tired.


http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/what-is-ms/index.aspx