My M.S. Story

I will begin with some basic information about myself.  I am currently 58 years old, soon to turn 59.  I am a wife, mother, grandmother, Retired Nurse. I have three grown children and 6 grandchildren.  I have a step granddaughter who has a little boy, so I guess that makes me a Great Grandmother (ah, way too young to be called that).  Anyway, it is what it is.

I was born in Arkansas but grew up in California.  Got married at 19 and soon after began to raise a family.  Life was good.  I was a Registered Nurse, made good income, had three wonderful children and a great husband.  As time went on, I began to have lots of back problems; from all the travel I did as a Nurse Consultant and years of lifting and caring for patients.  So, I ended up with 5 back surgeries which ended my nursing career. 

We decided to move to Georgia where our daughter and her family lived.  Wouldn’t it be grand to see our grandchildren growing up and be involved in their lives?  The rest of our children, parents, sisters and brothers all were in or around California.  This was a great, giant step for us.  Moving across the country.  A culture shock for sure.  We moved to Georgia in 2006 and after a year of crying every day, we began to make it “home”.  Now, I can say that we do love living here, the people with their Southern charm, the year round gardening and lifestyle.  So many great reasons to enjoy being here.  In the beginning, all I saw was a “foreign” country.  Seems like people did not even use the same language here in the deep south.  I had to learn English all over again. What does it mean;  “I am fixin’ to do something?”  Or, “I am carrying Jim to the store?”  I had no idea.  I had not even heard the word “ain’t” but began to hear it on a daily basis.  Needless to say, it seemed like a far, far, far away place from my California upbringing.

Back up a piece.  We love to camp.  We spent lots of weekends, and weeks, after I was disabled camping in the luxury of our Camp trailer.  One summer day in or around the year 2000, we were camping and I had laid down for a nap in the trailer.  I remember waking up and trying to sit up.  I immediately fell back down on the bed.  I tried again.  But, again, I fell back onto the bed.  I laid there a moment, not quite sure why the place seemed to be swarming in circles around me.  I could not tell up from down.  So, I just lay there. 

A few moments later my husband came in and he helped me outside in the fresh air.  I remember walking, or rather, him carrying me outside.  I had never been drunk, as I do not drink, but felt that I looked rather silly; staggering, as he tried to keep me upright out to my chair.  Our friends who were camping with us thought this a strange sight, for sure.  I sat there around the campfire ring and slowly my head began to clear.  I had been feeling a little nauseous at the time and just could not figure out what was going on.

When we arrived home from camping, I decided that I needed to see my doctor.  I made an appointment and was told I had “vertigo”.  OK.  No problem.   I was given a prescription of Meclizine (Antivert) and went on my way, feeling that this was the end.  Fast forward, years later to the hot summer of Georgia.  My husband and I were mowing the lawn (Georgians would say, “we were cutting the grass”) for some friends.  I again had the same experience as years earlier where the world around me was spinning and I had to fall to the ground and stay there.  This began to happen once or twice a month and then weekly.  I also began to see double.  I would see an image on top of another image.  If I shut one eye, it would clear.  But the nausea became a problem.  About the same time I began to have trouble with my right leg; numbness, tingling and pain.  I just pushed it aside feeling that it was a result of all the back injuries and surgeries I had in the past.  I would begin to trip over my leg just catching myself before I would fall.  Never actually hitting the ground.

I really just felt that I would just live with it and not get it checked out since I had been told it was vertigo and had medicine that I could take to relieve this symptom.  But, in the meantime, I had begun a ministry of visiting shut ins, the chronically ill; folks in our neighborhood that needed a visit.  One of the times I was visiting a woman who was recovering from a stroke.  As she asked about me, she was concerned, because the symptoms I had, were the same as she had, prior to her stroke.  I got the message and began the search for a real diagnosis of what was going on with me.

I was first sent to a Neurologist who took his time in asking questions and began the tests that would confirm or deny an accurate diagnosis.  I had my first MRI of the brain and the findings were indicative of a small vessel disease or demyelinating disease.  Nothing firm.  We waited a few months and repeated the MRI with the same findings.  Lots of white matter.  Many lab tests were done to rule out other diseases that mimicked one another.  I had an elevated sedimentation rate of 22 (showing an immune response to an inflammatory process outside the Central Nervous System) – ANA of 299, which is extremely high, so was diagnosed with Lupus – myelin protein 1.4 which was elevated – anti scleroderma 278 with a normal below 99 , so was also told I had Scleroderma. 

More tests followed; MUSK, negative;  Sjogrens, negative.  I was referred to a Rheumatologist, a Neuro Opthomologist, and it seems the list became endless.  The eye doctor said my Optic Nerve was good, which was a good thing.  She also, jokingly said, that since I was diagnosed at such an advanced age, 57, that I would probably not get any of the bad symptoms of Multiple Sclerosis.  I think that was a good thing!!! 

The Rheumatologist visit, was OH SO EMBARRASING.  I mean really, a doctor, in todays world that does not have hospital gowns.  Expects you to undress and then just sit on the table and wait for him, then answer a thousand and one questions.  NEVER again.  I told his nurse so and told him also.  I was then sent to XRay where I insisted on a gown.  Was given the XRay and then sent back to his waiting room.  I visited him every 3 months with no real outcome.  Finally, last Christmas, I was visiting him and could not see any point in going there.  He said I had Scleroderma.  He said I had Lupus.  His job was to check on how I was doing with these two diagnoses.  My neurologist felt that I did not have any signs of either one.  When I began complaining about the real things that were going on with me, he said “What do you think I am here to do for you?”  I replied, “I haven’t a clue”.  I could tell he was mad at me and also fed up.  His nurse came in and I was crying.  She said, “You’re not coming back are you?”  I said, “NEVER!!!”  She was the only sympathetic person in that place.  I do miss seeing her.  But I fired that doctor due to irreconcilable differences.

Well, my neurologist wasn’t too happy about that, but I have survived just fine since then.  I have since seen another neuro in Reno, Nevada, who ordered another series of tests; Evoked Potential Test,  Nerve Conduction Test, and a 3T MRI.  All of the above, plus, my second Lumbar Puncture.    The interesting thing about the spinal tap; my doctor called me to inform me that the lab had not handled the specimen correctly and therefore the important test he needed to confirm this diagnosis, was not done.  He hated to tell me, but that, I needed to repeat the spinal tap. He was so apologetic.  He was very unhappy with the lab.

I proceeded to have my third spinal tap which came back with OG bands.  Finally, the diagnosis was clear; Multiple Sclerosis.    Think of the relief, the fear, the future, and it all passed thru my mind in one instant.  Would I end up in a wheel chair having to rely on someone else to care for me?  Would I need a catheter because I would not be able to manage getting to the bathroom? All the things I knew about this disease came storming down on top of my brain.  I had finally been given a reason as to why my body was misbehaving.  It wasn’t exactly a death sentence.  I could go on!  Couldn’t I?  I was then given a treatment plan which included a once weekly injection.  ICK.  I thought.  I am a nurse.  Shots are no big thing.  But, to have to give myself one? NO WAY.  I just could not do it.

My church has a lot of nurses that belong.  So, I found one who was willing to give me my first injection and to teach my husband to give it to me weekly.  Of course, I was not instructed in the need to premedicate or increase fluids, or really any knowledge ahead of time.  Yes, I was given a book.  Yes, I was given a DVD.  But, when you are given such a diagnosis, you cannot retain much information on the topic.  I was one of those who read everything given to me, researched the internet, looked in my medical literature, but, when it came down to the actual time of getting the injection, all that knowledge went out the window.  I must say that my husband gave me the injections from February to June.  I then went on a trip to visit my daughter and had a friend give me two of the injections.  She was not available for my final shot before I flew back  home.  SO, I DID IT.  HAD NO CHOICE.  JUST WENT AHEAD AND DID IT.  I have been doing it ever since.  No biggy.

My first injection was February 11, 2010 (one day after my 57^th birthday).  I had been told by my brother, whose wife has MS, to take the shot at night so I could sleep thru the effects.  I had the injection at 6pm.  Went to bed as normal around 9 or 10pm.  What a horrible night.  All night, cold, shivering, burning up, couldn‘t get warm, literally shaking the bed, not enough covers to keep me warm.  I felt like I had the worst case of the flu, ever.  Every muscle in my body was screaming out in pain.  My jaws hurt so badly from all the shaking.  The following day, I could barely move.  It took all the energy I had to just get up and move to the couch, where I spent the day. 

The next day, I seemed to be all better.  But, I did not forget what that shot had done to me.  I began researching again, on how to overcome the side effects of the medicine.  My nurse friend told me to take Benadryl 50mg and Tylenol 1000mg about 1 hour before the injection and then again afterwards.  I began that regiment.  Only I figured out that if I take it 2 hours before and 2 hours after and again 4 hours into the night, I could go without any of the side effects.  At about the 6 month period of this treatment, I was able to sleep thru the night and wake up totally without any ill effects.  I could have a normal day “after”. 

I have some strange aches and pains.  My left arm on the inside goes numb and painful at the same time.  Now, how can that be.  If it is numb, you aren’t supposed to feel it???  Well, I feel it.  I also have my left little finger that burns like fire most of the time.  Don’t know what that is all about, but it does.  Almost feels like it is broken in the joint.  Oh well, it will not be the death of me, this little finger.  So, I carry on.  I type.  I blog.  I play games on the computer.  I bake and cook.  I love to bake.  I love to write stories of Gods goodness to me and my family.  It helps to focus on others and the goodness that I have received, then to dwell on what is happening to my body which is not of my choosing.

Many funny and interesting things have happened along this journey.  I teach a Sunday School class of ladies who are all over 80.  We call them the Fidelis Class, which means Faithful.  I always taught children in the church so I  continued on using Object Lessons with this new class of wonderful Seniors.  One Sunday I had taken all kinds of objects into the room to teach them their lesson.  I was doing just fine, until I held up a fire extinguisher.  I could not think of the name for it whatsoever.  I stammered along, stuttering, trying to come up with the name, when one of the deal ladies said, “it is called a fire extinguisher!”  I was so relieved that the name had somehow come up.  I surely could not have found it.  This seemed to happen pretty regularly when I would be talking to folks.  My grandchildren just laugh at me now.  We will be baking and I would keep telling them that something was in the dryer, meaning the oven.  I guess, I got the HOT part of it right, just the wrong appliance.  I just cannot seem to find the right words at times but I always get in the general area.  If it is something in the kitchen I am trying to recall, I might say freezer and mean ice.  OR, possibly knife when I meant shot.  Oh well, who knew this was to come after me.  But, I can do it.

My mother In law, who is 83, lives with us.  She is as sharp as a tack.  She is constantly correcting my words and putting in the right ones.  The ones I cannot think of.  Between her and my husband, I do not stand a chance, of coming up with the right words.  They  both know exactly what I mean even if I cannot get the words out.  That is one of the most frustrating symptoms I have of this disease.  Not being able to recall words.  Familiar words.  Words I always knew and could spell and now am at a loss to bring them to remembrance. 

I often will play bowling with them on our WII.  Only after I bowl a couple of times, and I am good, I begin to fall into the walls or the couch or them.  They just laugh and think it is funny.  Cannot walk down the halls at church without having to lean on the walls to get to where I am heading.  All of the church people have figured me out by now, but still are concerned that I am going to get hurt.  No falls as of this point.  No injuries.  I drop things.  Cannot seem to hang on to anything that I put in my hands, but have learned that it is going to happen and have adjusted how I do things now.  I have learned to slow down.  Take my time.  Not be in a rush.  I do not plan things in the morning or evening hours if I do not have to.  Afternoons are my best time.  I schedule myself rest times.  I am learning to take care of me.

It has now been almost 1 year since I have begun treatment.  I have only had one relapse which was corrected with a 6 day course of Prednisone.  Do I have pain?  Yes.  Do I have daily symptoms?  Yes.  Can I do anything about that?  Yes.  I believe that as I educate myself, reduce the amount of stress in my life, keep myself hydrated (I later learned to drink lots of fluids the day of and the day after my treatment) exercise and eat right, that I will have a better day.  This is a day to day disease.  Sometimes it is moment to moment.  Right now, I am having a good week.  But, I do not know about tomorrow.  I have learned to live today because tomorrow I might not be able to move, and make decisions, and go places.  I am learning to love in greater depths.  To do things I would never have thought I would want to try.  To spend more time with my family and my loved ones.

Multiple Sclerosis has no cure.  It is sometimes an “unseen” disease as we often look “normal”.  It does its work underneath, in hiding, behind the brain matter.  It is sneaky and sly.  Comes and goes where it wishes.  Robs you of motion, and the freedom to live without pain, and yes, robs you of life itself.  Many have lost their battle with this disease.  Many more have become crippled, wheel chair bound or even bed bound.  Some cannot feed themselves, or dress themselves or even go to the bathroom on their own.  They are the heroes in this story.  They have suffered the most and yet, the ones I hear about, have fabulous stories to share.  They have not given in.  They have not given up.  There is still hope. They are still praying, seeking a cure.

What can you do?  How can you help?  First of all by listening.  Not having a ready answer.  Not giving a tongue in cheek response.  But really listening.  Listen to what is said and what is not said.  Offer to do small acts of servanthood.  Bring a meal.  Stop by and mop a floor.  Offer to sit with the afflicted one so that a caregiver can have a much deserved break.  Send an encouraging card or scripture.  Offer up a prayer.  Call them on the phone or drop by for a “cup of tea”.  There are so many small things that are huge to those who are in the midst of the storm.  Take yourself out to the waters with them for a time, and allow them to begin to heal.

Submitted by words2bless (Leola Stotts)