Something is terribly wrong!

I remember the day as if it were yesterday.  Dec. 20th 1993.  I was sitting on the sofa reading a book to my son Nicholas.  He wanted me to read Dumbo to him for the 5th time that day. I didn't mind if it wasn't for my vision starting to act up.  First things started to go blurry.  I thought maybe I'm just tired. Slowly it seemed as if a fog had rolled into my living room.  Trying to read was nearly impossible.  

Rubbing my eyes didn't help either.  Figuring  I had something in my eyes I thought I would get up and go into the bathroom and wash out my eyes.  Problem was, as I stood up  I was a bit dizzy and my balance was horrible.  Staggering  and stumbling  through the hall way I made my way to the bathroom.  Holding onto the sink so I could sit on the toilet without falling off or completely missing it as I went to sit down. What was going on?

I soon realized that I was shaking like a leaf.  My son Nick was getting very upset and asking what's wrong mommy? What's wrong?   Panic started to set in.  My baby oh my god am I going to loose my baby? I was 4 months pregnant and scared to death something was terribly wrong.  My heart started to race.  Then the worry of my long time heart problem was getting to me as well.   Is my heart giving out?  Can this all be due to my Mitral Valve Prolapse or Wolfe Parkinson's Whyte Syndrome?  I certainly didn't want to loose my baby!  I tried to call my husband, who was in the navy and on board the USS Constillation at that time. I was unable to dial the phone.  Fingers couldn't find the right buttons, hands shook so bad! Vision was doubled! I don't remember how many times I tried to dial his number but luck was with me as he walked in the door.  He took one look at me and went white.

Within an hour he had me at the emergency room at the San Diego Naval hospital in San Diego California.  We didn't have much of a wait at all. They took me back within minutes and had me fill out forms but with the severe tremors I had I was unable to write and had to have my husband fill out the forms for me.  Even signing my name was a hard task and barely legible. 

After spending some time on both a heart  and fetal monitor, the doctors said that everything was fine with my heart and the baby but that they would need to do an MRI to determine what was going on. Unfortunately since I was 4 months pregnant they were unable to run any more tests. They said then that they suspected MS but I didn't really pay any attention to those words. My concern was for the baby. 

Poor Nicholas, who was 3 at the time, was upset and scared half to death for both me and the baby. He insisted on coming back into the ER room, where they had me all hooked up to monitors, and seeing how I was doing.  My husband and I had to explain to him what everything was for.  He certainly didn't want anything to happen to his mommy or the baby he asked Santa for last Christmas. His face was full of fear as he looked at all the equipment.  I remember his saying, "mommy are you going to die?"  Boy did that make my heart sink into the pit of my stomach.  The doctor came in and explained to Nick that mommy just needs plenty of rest and that I should spend a few weeks off my feet.  Stress was probably the culprit.

A few weeks off my feet and the tremors slowly subsided.  But they were so bad sometimes it felt as if someone was shaking the bed when I was trying to sleep.  My vision slowly returned as well. But not without leaving me with lots of spots in my eyes. 

Things pretty much returned to normal with a few exceptions.  My depth perception was slowly going on me.  I noticed I couldn't navigate walking through door ways as well anymore.  I kept hitting my shoulders as I walked through the door way.

After having a beautiful baby girl, whom we named Shelby, my only problem was the depth perception being off.  I kept hitting the poor babies head on the doorways as I would walk from room to room.  Poor thing had knots on her head.. I was afraid someone would report me for child abuse.. So I soon started pushing her around the house in a stroller.

While Shelby was growing up I would play with her on the floor and noticed I was starting to have problems getting up off the floor.  I remember thinking,  "I can't be all that fat can I? Gees I must be getting old!"   Those legs of mine just didn't want to work anymore.  I had to pull myself up onto the sofa first then get up from there to stand up again. "Man I'm aging fast" I thought to myself.

I decided to go back to work which was a tuff task.  At the time every job I had seemed to really wear me out.  No matter what I did I always went home feeling like my legs were about to buckle on me and that I would collapse for severe exhaustion.  I always thought that I must be burned out or something.  It couldn't be a physical problem.  I'm just tired and burned out.  Must be the job.  My husband agreed and suggested I find something else. I got a job close to home but that was too much for me. Found something else but that wore me out too.  Wore me out to the point where the next day I couldn't get out of bed.  I just couldn't understand why or what was going on.  I've heard of job burn out so many times that I figured that's all it was.

Well in Jan of 96 I found out I was pregnant. He was our blizzard baby. We had a big blizzard that winter and all the roads were closed. No one was allowed to be on the roads. Thus many women got pregnant that winter. My husband and I were so excited.  We always wanted 3 children and this would be the third and final one.

Not long into the pregnancy I knew there was no way in hell I would ever have another baby after this one.  I was so tired all the time it was awful.  I wanted a cup of coffee so bad it made me nuts.  Being a good mom I followed the doctors orders and stayed away from caffeine.  I was physically and mentally exhausted.  I couldn't wait for that pregnancy to be over.

I was less than a week away from my due date and my OBGYN decided to induce me.  I was really getting ragged and could barely lift my feet to take a step. This pregnancy had taken allot out of me.

Within 6 months after Brandon's birth, things started to go wrong again.  I was loosing my balance again, had dizzy spells on and off again, when I woke up I felt hung over without the fun of the party the night before. I just shrugged it all off again.  

I enrolled in school for hairdressing. I thought this was what I needed to perk me up again.  A change in career.   Yeah that was it... I just needed a change.  I was just burning out that's all.   Well not long into the classes I was loosing my balance again, had dizzy spells, and now my eyes were acting weird and causing me lots of pain.  At that time I didn't know it was optic neuritis.  I was bumping into people and things all the time and now my feet were going numb on me while I was walking.  Now that's weird!  When I would come in doors after being outside for a few minutes my pupils in my eyes were unevenly dilated.  An instructor noticed and asked me if I was ok.  She pointed out that my eyes were unevenly dilated and my corner of my mouth looked like it was drooping.  Well I didn't see what she meant about my mouth but my eyes were definitely out of whack.

One day, while trying to get into my van I stepped onto the street and it felt like I had fallen into a hole.  It scared the tar out of me.  My vision was acting up so badly that I was seeing things move that were not supposed to move like street signs. Colors were swirling around in my vision also.  I immediately turned my van around and headed back for home.  There was no way I was driving one more block with my vision being that bad.

As soon as I got back home I called my dr. and made an appointment.   Of course by the time my appointment came around the symptoms had gone away so I cancelled the appointment.  I had decided to just forget about it again and move on with life.  I had finished school and got a job at JCPenny  and doing really well.   But that was just the beginning.   The summer of 98 I had gotten the flu and had a bad fever on and off.  Weakness and fatigue were really bad after this and just couldn't seem to recover.  I went back to work but just couldn't seem to stay awake or keep up with things.  I was so weak and tired I could literally fall asleep sitting up.

My headaches were constant and turning into an all day thing now. I was taking extra strength Tylenol like they were candy.  Even keeping a giant sized bottle at my work station at all times and small bottles all over the house and in the car. Whenever I would step into the sunlight my eyes hurt even worse and everything looked like I was viewing it through an old piece of glass.  I saw cracks in things and warped spots. Everything was distorted.  I decided I had to get to the bottom of this.  I couldn't take it any longer.  This time I was making an appointment and no matter how good I felt on the day of that appointment I was still going!

First doctor I went to was a diagnostician.  She told me it was either MS or Vertigo.  She thought it would be best to rule out the vertigo then look further if that's not what it was. Finally a doctor who would listen to me and not call me crazy!    But MS? I knew people who had MS and they looked great.  They couldn't work or drive but they still looked great.  I had no idea what MS really was.  I never read about it before but had only heard oh so and so has MS.  Boy was I in for a surprise.

First specialist I went to was an eye, nose, ear and throat specialist.  This guy knew me from when I was a teenager and had Bells Palsy so he knew some of my medical history.  He tested me for all sorts of things.  Even checked my hearing. My balance was off and I kept bumping into the walls and my hearing was fine except for my left ear was not up to what it should be but it wasn't all that bad and not worth worrying about.   He told me straight out that it was in no way vertigo and that he believed I had MS and that I needed an MRI.  He suggested I find a neurologist and get the MRI done at that time since they usually want to order them anyway.  So now its on to the neurologists.

First neurologist was a joke.  I mean this man shouldn't be allowed to practice medicine on a dog let alone on people.   All he did was insult my in-laws and say that due to the family I married into that no wonder I was having problems.  They were causing stress and depression in my life and all I needed was a good divorce attorney.  Needless to say my husband was not thrilled to have to sit there and listen to this man put down his family like that.  This neuro. wrote me a script for a heavy duty anti depressant and we were sent on our way.  He never once looked at my MRI's.  Not once!

Now onto the 2nd neurologist.

Second neurologist was smart as a whip but had the personality of a box of rocks.  He immediately detected that I had nerve damage in the center part of the brain that controls the reflexes for the chin.   He said the same part of the brain that controls eye movement also controls the reflexes for the chin and my chin reflexes were very sharp.  He said I could crack walnuts with my jaw lol.  Which was not normal.  He also noticed that I had developed atrophy in my left eye and that my left eye was slowly drifting inward.  This explains the pain I have around the orbit of the eye. 

My vision was becoming a major factor as well so he had sent me to the Wills Eye Institute.   There they detected that I had optic neuritis and called up my neurologist and informed him that I had shown signs of MS in my eyes and had scaring on my optic nerve.  I was also starting to go color blind in my left eye.  Reds being the first color to go.  They seemed more of a pumpkin orange to me. I was also starting to see gray spots and lines in my vision. Not your normal floaters for sure.  One or 2 floaters is fine but I had at least 2 dozen or more.  When the light hit my eye it looked like a swarm of nats were in my face.  Until I figured out it wasn't bugs but something in my eye I was swinging around in the air at something that wasn't even there.  I'm sure people really thought I was a wacko!

My balance was getting worse.  People thought I was a drunk all the time.  My one neighbor even asked me if I had been drinking.  When I told her no that it was possible MS she said oh my god you poor thing.  She said that she had thought that also at one point but wasn't sure.

Since nothing had been showing up on my MRI at this point he was reluctant to treat me.  All he offered up was a list on foods that cause migraines and suggested I stop using lemon in my ice water.  My husband and I asked him for some help with the fatigue and finally he did put me on amantadine.  Only problem I found with this is that it caused me to have problems relieving my bladder and also caused my heart to race. I had to stop the amantadine after 6 months.  It wasn't worth the side effects to me to continue taking it. 

Every 3 months I had new MRI's.  The Neurologist was looking for subtle changes.   Some of my newer symptoms suggested damage on the spinal cord in the neck area and he wanted to look to see what was going on there.   The c-spine was the charmer.  Lesions showed up all throughout the neck area.  He also wanted to get a spinal tap, or lumbar puncture as its called by the medical profession.   At first I said I had to think about it.  I had seen this procedure done when I was a volunteer in the hospital and was not at all thrilled about getting it done on myself.   After careful consideration I agreed.   He swore to me that the man doing it was the best they had and that he had done at least 100 LP's a week.   What a joke that turned out to be.   I should have asked if any of them were successful.   He tried 5xs with me,  my husband says it was 6, and didn't get it in even once.  He did however get my syadic nerve 5xs and make my right leg shoot out and nearly kick my neurologist who was standing at my feet.

Not long after these months of going back and forth this neurologist finally said I had MS and Fibromyalgia.  He decided he wanted me to start Copaxone and sent me and my husband home with a stack of videos and booklets.  I was convinced that I knew all there was to know about MS and was fully prepared and I would be just fine.  After all,  everyone I knew who had it "looked" normal to me.  Boy was I in for a big surprise!

Well a day or 2 later I got a phone call from my neurologist. Apparently he was unable to treat me anymore.  First he sighted the fact that I had a few relatives who were doctors and he was concerned about a law suite. If one of the treatments hurt me in any way he was worried that my relatives would go after him.  Then he mentioned that the hospital he was working for was making cut backs and his department was one of them taking the cuts.  He was not allowed to take on any more patients or start treatment for any current patients.  Wow and I thought I was on my way to getting this monster under control!!

Now onto Neurologist number 3!

My 3rd, and no doubt not the last neurologist that I will see, is great!   I just love the guy.  He noticed my left side of my face starting to droop.  He asked which side of my face I had bells palsy on and when I told him the right side.. he said, "are you sure about that?"  I said "of course I am. That's not something you forget so easily,  Especially when it happens to you as a teenager.  I was mortified when I was hit with Bells Palsy!"

He wasn't to happy to hear me refuse to undergo another spinal tap but I was firm on that one.  I told him, "when you wrap your lips around a car battery, then you can do a spinal tap on me!"  "Until then? Forget it!"  He said well what then do you suggest?  I said well all but one doctor I've been to has said its MS.  I just want to treat it and slow it down.  I have a life, kids and want to keep going as long as possible.   He said "ok, you have most of the clinical signs and symptoms of MS as well as signs of MS on your MRI's.  Which treatment do you prefer? I'm figuring you have researched all of this?"  He figured correctly.  Since I am a big time chicken when it comes to needles I surely liked the idea of a once a week shot.  I also had on again off again optic neuritis in my left eye and had read reports that Avonex was the only one of the then 3 approved ms injectables proven to help clear up optic neuritis.   So I asked to go on the Avonex.  I stated to him that due to the optic neuritis this was the one I felt would do the most good for me.  Plus the fact that it was once a week helped as well. 

Well several years later here I am.  And here you are reading about my long time struggle to get a diagnosis and treatment.  I was 25 when my first attack hit, and 31 when I was finally diagnosed.  Sept. 9th 1998.  On my birthday!  I think all I did was cry when I got home from the doctors that day.   I cried for at least 6 months on and off.  Woke up at 2am and cried,  3am, you name it.  Legs would go numb up to my hips and I would cry.   People who don't have this disease have no idea what its like.  Never knowing if today your legs will quit on you or not.  Will I ever have feeling in my left arm again? Will my feet ever feel right again?  Will this over all flu like feeling every go away?  Day in and Day out feeling like garbage.  People in my family tease me and make comments saying I act like an old lady.   Well I wouldn't wish this on them for anything.  If they only knew how much we all just want to get up and go out without falling.  Go shopping without having to hang over the shopping cart for support.  Wouldn't it be great to go dancing again without having the awful confusion that comes along with all those sounds getting mixed up like that?    I would give anything to go out in my yard and pull the weeds for more than 2 minutes without falling over and loosing the feeling in my legs.  Sure I can walk.  I'm thrilled that I can still walk.  Just don't call me lazy or say that I "act like and old lady"   We surely are not lazy.  Our bodies just cant keep up with our minds want to do. 

Depression? Yes I get depressed.  I used to get mood swings and the giddies really bad too.  I live across from a funeral parlor and would cry at the sight of the cars parking for a viewing.. and not just cry... I would giggle and cry at the same time.  Now if that's not enough to make you think your going loopy I don't know what is?  Thanks to the celexa that's a thing of the past. 

Tremors? oh yeah, I get that too.  For me they act up when I'm hot or tied.  Then I look like a spastic rag doll.  A cute spastic rag doll as my husband tells me. He's a keeper ;)

That brings me to relationships.  This is not at all easy on a relationship.  My husband and I came so close to breaking up its not funny.  He gets so frustrated at times.  Worst thing you can do is say oh woo is me!  I asked him what was causing him to be so mean to me.  He finally admitted he's scared.   Financially and for my physical well being.  I figured that's what was causing all his out bursts.  When the bills stack up things can get pretty bad.  But for better or for worse we are still together.   We both put up with allot from each other.  There were a few times he asked for a divorce and we barely spoke to each other.  He was tired of all the doctors and all the tests and admitted to me that he didn't want to go through it anymore.   I told him neither do I.  I just wanted to get on a treatment for whatever it was and get back to living again.  Quite frankly, I didn't care what it was I just wanted it out of my body.  The only way anyone would treat me is if I had a diagnosis.    Now hubby and I are fine.  We talk more, he helps out more, I do as much as I can when I can and he understands that.  He knows he's not going to come home to a spotless house anymore nor will he be likely to come home and find dinner on the table waiting for him.  But, when and If it happens he is thrilled because he knows I had a good day that day.  :)

Family is a tuff issue.  My parents are great and don't judge me and how we live. I've never gotten any bad comments for either one of them.  My in laws, who are all in the medical field, have been more understanding and helpful than I could ever have imagined.  We rarely ask for help but when we do they are there and ready to lend a hand watching the kids for us.  There have been times like during a relapse when I had to have someone take care of the kids for me till my husband got home from work.  But those days are fewer and farther apart now than before.  Thanks in part, I feel, to Avonex.   Being on Avonex since June of 99, I have gotten much better in many ways.  My cognitive skills have improved enough so that I no longer get lost while driving.   I still rely on post it notes and my Palm Pilot to remind me of appointments though.   I still have very bad fatigue but I'm not sleeping all day anymore.  Now I take one nap a day for 2 to 4 hours where as before I would take 2 or 3 naps a day 3 or 4 hours each time.  My eyes no longer roll around in my head either like they used to. 

I'm disappointed with my siblings.  The comments they make about me hurt.  I go to the get-togethers only if I'm feeling well.  I sure don't want to go during a relapse and have to hear how I'm "acting" like an old lady.  Oh they have said much worse about me.  But I've learned to just ignore them and realize that nothing will change them and they will always be rude and obnoxious towards me.   Live and let live I say.  And no I'm not just sitting home stewing away over my diagnosis.  And yes I do work.  I run a lovely online support group that started as a few photo pages and has grown so large that we are now having get-togethers, ramp projects and awaiting 501c3 approval.  

So you see siblings.... I am busy.  I'm busy helping people.  By helping them I am helping myself.  I decided to take a proactive approach to my disease.   Take control of my life and my treatment.  That's all anyone wants.