Wednesday, November 5, 2008

Multiple Sclerosis? Are you sure??

****Retro Post more of a fill in the blanks***
I will start from the beginning so you can have an idea what it is like to have this disease.

Back in August (2008) I had a spot on my leg that was going numb. I thought it was from the really bad sunburn I had gotten a few days before. Then, I went bowling with my daughter and my fiance. Somehow I managed to slip and fall landing on my hand and my butt. The next day when my arm swelled up and turned purple I decided to head to the doctor. As much as I hate doctors, but my back was hurting from the fall too. Sometime during the day my entire leg went numb. Which by the way if you have ever tried to drive or walk with a numb leg, you will realize how funny it is.

Doc does all kinds of x-rays and tells me I have broken three little bones in my hand and wrist, and pulled a tendon in my arm. He assumed the back pain was from the fall and referred me to an orthopedist. Well, in the two weeks time it took to get in his office, the numbness had spread and I was having a hard time walking. He ran all kinds of tests and decided it was not my spine. It is not a pinched nerve he says.

So doc #2 refers me to a neurologist. Takes another week to get an appointment with him.

In the mean time I am googling all the crap that is going on with my body. Could be anything from a pinched nerve to worst case scenario, Multiple Sclerosis. it can't be MS! Nobody in my family has ever had it that I know of. There is a history of cancer, thyroid disorders, insanity, even a few cases of transgender surgery, but not MS that is ridiculous.

I Finally go to the neurologist. I was expecting him to tell me the Ortho was mistaken and it is a pinched nerve. I was expecting him to tell me to try Chiropractic. I was NOT prepared for him to tell me there is something wrong with my spinal cord and I need to go immediately for an MRI. He would not tell me what he thought it was at this point he told me it could be a number of things but he wants me to get the MRI right away so that we can figure it out. So his nurse schedules my appointment for the MRI. She was able to get me in that same day, and as I am standing there she is on the phone with the radiologist, and she says suspected lesions on the spine. Flashback to all of the google research...The only time I have ever heard anything referring to spinal lesions was MS.

So I freak out! I had a few hours to kill between appointments and as soon as I got in my car to leave it hit me....I might have MS. It hit me like a gunshot. in fact, I think being shot would have been easier to deal with. And as with all of life's problems I call me mom. I am crying so hard she can't understand a word of what I am saying. I managed to pull myself together and tell her whats going on. She tells me I am insane. It's not MS and there is no need to freak out until the MRI is over.

I make it through the MRI and the doctor's office calls me the day before Halloween and tells me I need to come in the next day. Hey my luck must be kicking in I think. Halloween is my favorite holiday. he can't give me bad news on my favorite day of the year.

Boy was I wrong! The first thing he says to me.."I have the results of your MRI and looks like what I expected. You have 4 lesions on your spinal cord. If I was a betting man, I would bet my life savings you have MS." But to be sure he wants me to go in for blood work, another MRI (on my brain this time)and a lumbar puncture so that we can rule out anything else that causes MS like symptoms like lupus or lymes disease.

**** Updates to this post******
2 sets of bloodwork, 2 MRIs, a spinal tap, a second opinion, a third opinion, and even a few radiologists later.......

It's confirmed. You have MS !

Like most people who are diagnosed with an incurable disease that has no definite cause I was scared, confused, and trying to figure out how long I have been living with this. It's been a frustrating roller coaster ride and this is just the beginning.

They found 11 lesions in my brain, 6 in my spine, and yes my O-bands came back positive. We also did 5 days of IV Steroids that kicked my ass pretty hard.