Saturday, August 17, 2013

MS & THE LONG ROAD TO DIAGNOSIS!

 
 Jeannine Everett, Columnist, MSnewsChannel.com

 I started having problems when my son was born in 1986.    OK off to the doctor where I was told that it was just because I wanted to be at home with my new son (I really did but that was not it).  A few months later same thing different doctor who told me I had Epstein Bar Virus with Chronic Fatigue (note to self, didn’t know there was a difference but I guess I am wrong).  He also diagnosed me with hypoglycemia. ugh. So ok, how do I go on with my life?  I just did.  At that time I had 2 children, one newborn and one 9 years old so how can you just stop?  I also found out at that time that not everyone's legs go numb when going in a hot tub. lol

I didn’t stop, how could I?  I had only finished some brief college courses throughout my life and at that time I got an opportunity to work for a large insurance company during the Y2K scare, those really nervous about the coming roll of 2000.
I would be programming and it would be a really big pay increase for me so, well, I said “HELL YES!  But soon I started to realize my arms were going numb.  HMM really different.  So again I went to a doctor who told me that it must be compressions on my ulna nerves due to my job and surgery was a must; a must, really in which he said “yes on both elbows.  So I had the surgeries and eventually lost my job, with workers compensation but lost my job.  DAM just thought it was going so good so far.

Is she diagnosed yet… no, not even close.

I ended up going to a vocational school for recording engineers, what the heck; I could use these skills in other areas in the job market.  I lived in Southern California and I was in the middle of the entertainment industry.  I kept studying and studying, had people help me study and don’t know how I did it I passed with honors.  The school asked me to stay on to teach as well as teach computers because so many recording boards were now computerized.  I went to get my credentials (luckily not much studying this time and OK said yes again; this was so cool, lots of late nights and creative minds all around me in the heart of North Hollywood.  But as I was teaching I started to realize I didn’t remember what I had learned (it was like the final test at the end of my courses and got 100% but didn’t know why I knew it or how I got there.  I stated getting depressed, like I was stupid, I didn’t understand what was going on but I tried to fake it.  On top of that due to recording sessions lasting way into the mornings sometimes, I was working 70 hour work weeks.  I was tired and one day I got these wavy lines throughout both eyes.  It lasted for about 5 minutes and then it was gone so I just dismissed it. When it happened again I saw a neurologist, did an MRI, made me wait 1 month for an appointment (OMG I thought I had a brain tumor) and when the appointment came he told me I was having optical migraines and be glad I wasn’t having the headaches (really?).  He told me he saw a lesion but don’t worry until my left side went numb, then call him back for an appointment (I am really not making this stuff up people).

 But I felt so defeated.  How could I forget everything I had learned, I felt like a fraud, a loser.  So since I went through the Northridge earthquake around that time and lost everything but my truck, dogs and kids I decided to move to Northern California and start again.


After finding little jobs I got employment for again a large telecommunications company with great benefits.  OK, THIS JOB WAS SOOOOOO STRESSFUL!  And guess what? the wavy things in my eyes came back and a new symptom, I had a hard time swallowing.  This was one of the scariest things to happen, you go to swallow and it doesn’t work; talking about feeling like you are dying.  I also would get lost going to the store, to work and almost everywhere.  I went to the doctor again and had a lot of tests... nothing.  They finally decided to do an MRI and then sent me to a neurologist in San Francisco.  Talk about waiting for a doctor… my appointment with this GOD-LIKE man was for 9, yes I said 9 months later.  The original doctor who read the MRI said I had MS like lesions and the only doctors who could tell me what was going on were specialists were farther up at Stanford University and I was in Monterey so I had to wait it out.

Almost……

So finally, the appointment: he walked into the room and asked me about my symptoms.  After a few minutes he took my MRI’s from me and left the room for 2 hours.  When he came back into the room, he told me I had bad discs in my neck and if I didn’t get them fixed I could become paralyzed and oh yes, I had MS.  He handed me a book about MS and then told me to go home to Monterey to see a neurologist.  My boyfriend then turned to me and asked me if I was happy……… REALLY?????? HAPPY????  Don’t even know what this thing is.  I guess I had to read the book.  Finally after 14 years, I kinda understood that I had Multiple Sclerosis.

I went back to Salinas and went to a neurologist who quickly put me on Avonex. 

More to come.. Until then carry on.