hmpfff

Well, went to the neurologist and surprise surprise, I did not see the one that I was scheduled with. Basically I had a medical student examine me, then I saw another Neurologist, who I actually really liked.  Anyway that's neither here nor there.  In the end, I still have MS, no changes to medications at this time and see ya back in 3 months.
Okay, more of the information highway about Multiple Sclerosis.
Let's talk medications.  There are a plethera of medications to manage symptoms and some that claim to "slow" the progress of the disease.  The links provided on this blog can lead you to specific information, so I will just tell you about some of the medications  I take.
For the type of MS I have, RRMS, there are disease modifying drugs.  There are, I believe 6 different types, 5 of which are in the same classification as interferons.  I take the odd one out.  I take a medication that is called Copaxone.  It is a shot I give myself nightly, and actually my husband does most of it, God Bless him.  From what I understand, this medication is supposed to work on the response of cells we carry in our bodies called killer T-cells, supposedly allowing the suppression of an overactive immune system.  This is based on the theory that MS is caused by an immune mediated response in our bodies (who knows) and by inhibiting our body from attacking the nervous system, it would ultimately slow down the progression of the disease.   Let me reiterate that this is just my very basic knowledge and it is not meant to be anything other than my understanding.
Then there are my symptom management medications.
I take a medication called Amantadine for the chronic fatigue that MS can cause, somewhere around 50% of people with MS feel an overwhelming fatigue during the course of their disease.  Amantadine's effectiveness on fatigue was found as a "side effect" of the original intent for this medication. It was originally intended as a flu medication when it was found to reduce fatigue. I am yet undecided if it actually works or not.
  MS pain is different from "regular" pain because there is no real source for the pain.  It's a short circuit in the nerve impulse that perceives pain where there is no visible injury, so conventional pain medication is not really very effective.   I take a medication called Elavil for chronic pain in my left leg. medication is actually an anti-depressant when taken in high doses, but is used for pain in the smaller dose range.  Now I just started this medication 2 weeks ago and it supposed to take up to a month to show an signs that it is working, so the jury is still out on this one.  I was taking Cymbalta for the pain and it really helped except for the unfortunate fact that it was affecting my liver (Bummer to this).
Another medication I take is for the painful spasms that I get.  This medication is called Baclofen.  Just think of having a charley horse all the time and that is what MS spasms feel like, at least in my version.  This medication helps prevent those spasms from happening. This one has been really helpful for my pain.  I notice a big difference on the days I don't take it.
Now when I went to the Neurologist today, he wanted to talk about my bladder and putting me on something for that too.  I am like what?????   more medication...  I am a walking pharmacy already.  But we decided to hold off on anything until I see the Urologist in 2 weeks.
Phew, that was way too much information I think.  I will have to end this post on that note.

"There is more hunger for love and appreciation in this world than for bread." ......Mother Theresa

purpose

Well, I forget what day of steroids I am on, which is good thing I have a pill box.  I am going to see a new Neurologist tomorrow, one who doesn't specialize in MS but one who is actually plagued by the disease herself.  I am looking for a different perspective on this disease, something beyond the box.  I am interested in seeing if she has symptoms that aren't classified as "MS" symptoms
I think if I can survive unscathed, meaning being able to stayed employed, I will further my nursing career and become an advanced practice nurse for MS.  That way I can empathize more with the patients being in the midst of it myself.  I really would like to be involved with research so I can help with finding a cure and even what the real cause is.
I believe with all my being that there is a reason that I have this disease.  I have a strong desire to be involved with helping people out like myself.  The problem is I have to get myself to that place where I can.  All these setbacks can be kind of discouraging, but I think there are lessons to be learned.  Perhaps these lessons will be what allows me to help and encourage others.

'When one door closes another door opens; but we so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us.'  ~Alexander Graham Bell

my wife is full of life even when her body doesn't allow her to show it. i am proud of her and how she continues to have a wonderful sense of humor with me even when dealing with the very serious and impactful effects of MS. she is a loving mother and even when it hurts still tucks the kids in everynight and lets them know that they are loved. her whole body hurts right now. i wish i could fix it but it seems the best i can do is stay by her side and let her know she is not alone. i wish others could hear her beautiful laugh when she finds something really funny. maybe i'll get a sneak recording of it for one of these days.

what is MS

Today was a good day.  I am starting to feel better again, hopefully for a long long time to come.  I thought maybe I would write today a little more information about what is this disease called Multiple Sclerosis.
The word sclerosis implies scarring and that is essentially what happens.  A person with MS usually has more than one scarred area in the central nervous system (brain, brain stem, spinal cord) which causes a loss or delay in transmission of nerve impulses.  They believe the lesions (scars) are caused by inflammation, but what causes the inflammation is a source of great debate.
The extent of damage and disability depends on location (kind of like real estate, it's all about location, location, location).  I have been told that someone can have numerous lesions and have very little disability, while someone else can have just a few lesions in the "right places" and have significant disabilities.
There are essentially four different types of MS:

•   One is Relapsing Remitting, which is what I have.  In RRMS, you periods of attacks where your neurological function becomes impaired, depending on where the inflammation is occurring is directly correlated with the symptoms you can experience, and then a recovery period which can take months.  During the recovery period you can actually regain most or even all of your function back.  The problems comes with the more ocurrances you have the less function you regain and your "baseline" starts to come with more disability.  Baseline refers to the point of most recovery.  So at first you can return to normal, then the next time you may recover to have foot drop and that will be your new baseline.
• The second type is Secondary Progressive.  This is when you have more frequent attacks with smaller recovery periods and more disability.
• The third type is Primary Progressive.  This is when you have more attacks and no real periods of recovery noted.   More disability at a faster rate, very little periods of relief.
• The last type is known as Progressive Relapsing.  This one is a little confusing to me as it seem similar to the one above except that your disability is from the onset, meaning you never really return to any baseline, but you still have small periods of relief.

Phew, that was a lot to absorb and my brain is fried.  More information to come.  Be sure to check out the links on my blog page for more in depth information.

"Wrinkles should merely indicate where the smiles have been." ......Mark Twain

Not much to say today.  Just an average day.  Still on the steroids.  They are treating me a little different this time because I have such a bad reaction to the high dose of steroids.  Usual treatment is 1000mg of Solumedrol or Prednisone a day for 3 days which in comparison to the 5mg your body produces is horrific.  This time they put me on a smaller dose for 2 weeks.  I always get sick when they don't wean me off so I do it myself otherwise it will be another trip to the ER and the good Lord knows I hate going to the hospital.

" There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow". - Orison Marden

walking, running, jumping, skipping

Do you ever look at  something or someone and wish that you could do what they do or have what they have?  I think its called coveting.
Well sometimes I covet the walk of people.  I know that sounds strange but I was always a speed walker kind of girl, like I always had somewhere to be and I was always running late.  Now I walk, or mosey is more like it, and the little grey haired grannies are passing me by.  I am a people watcher and now I notice more how people walk.  I see the people with their harried walk.  The people with their just browsing walk.  The strollers.  The limpers.  The ones with the walkers and the canes.
 I notice this more now because I haven't had a normal pace walk since April of last year.  I have come close to achieving it on many occasions but just when I think my gait is going to return to normal, in slides the sneaky disease and steals me just moments from my glory.
The mystery of MS is that at the beginning of the day I can walk better than at the end of the day.  It goes down hill from hour to hour. I have a cane, I even spruced it up a little, but to be honest I don't use it like I should.  I can't really figure out why I don't use it other than I think it makes me more sensitive to the fact that people will know that I am not normal.  Never mind that it actually lets me walk balanced and maybe even a tad faster, but it just seems so not me..
 I keep hoping that I will stop having relapses and get to a near normal walking pattern again.  Maybe once I can come to terms with this disease, it will be easier. I am not willing to give up my hope though, but I feel like I still am going through some of the 5 stages of grief.  I am in a mix of different emotions at different times and today by the tone of this post you can probably gage where I am at. (it must be the steroids talking, can't wait to be done with the steroids)
The funny thing is I have this sudden urge to want to become a runner.  I have always hated running, but now that my body won't allow me to do it, I want to so bad!!!!  The other day I figured out that I could no longer skip either :0(  The coordination was no longer there for me to accomplish this task.  Seems silly because what is the purpose of skipping to an adult, just a childhood thing, but now I really want to skip too!!!

'Pick battles big enough to matter, small enough to win'.  ~Jonathan Kozel