Sunday, October 10, 2010

The Diagnosis...

   I started this post back in June when I got my diagnosis....and then walked away from it without finishing it...several times over. I just couldn't do it. I couldn't face it in my every day reality. I couldn't put it into words when I couldn't even wrap my mind around it. So I walked away from my blog and haven't come back until now...

Multiple Sclerosis

Multiple Sclerosis

I have Multiple Sclerosis

   I can still hear my Neurologist, Dr. G, saying those words. I'm sorry Denise but all of your MRI's are conclusive. You have multiple lesions in your brain and the one in your neck. At some point we will need to do an MRI of your spine as well to check for more lesions.

After hearing MS all I heard Dr. G say was Blah Blah Blah blahblah blah blah...

   I was glad I had someone with me but was horrified that it was my 19 year old son. What a way for a child to find out that his mom is sick. Not that I had much choice, I didn't. I was still recovering from having high dose steroid treatments, and let me just tell ya the side effects, for some people, are ugly. I'm one of the lucky ones. It was ugly. I have a love/hate relationship with steroids. They worked wonders but I felt awful for a good 2 weeks.

Here's a little history:

   It was May 21,2010. I'll never forget the day. It was my sons graduation day. It had been a pretty layed back day. We had all been out of school for a couple of weeks and just enjoying the beginning of summer at home. I had noticed some tingling in the very tips of my toes for a couple of hours. Not even anything major and honestly if I hadn't been sitting at home all day with no shoes on I probably wouldn't have even noticed it.

   As I was getting ready to leave for graduation, the side of my arm and hand, down by my pinkie finger, started to tingle. I dint think much of it at the time. Earlier in the year I had been diagnosed with Carpel Tunnel. I had been holding a camera for a while by now so I just attributed the tingling to the combination of the two.

   By the next morning both of my arms were tingling. By mid afternoon I was numb and tingling from the chest down.

   After a few days I went to a walking clinic to see what was going on. I figured a walk in would be cheaper because I don't have insurance and didn't want to waste the money for them to tell me I was OK, no big deal don't worry. After several hours in the clinic and a visit from the local vampire to draw what seemed like a gallon of blood I left with no answers and a very large bill.

  About a week later my tingling had turned into full blown numbness and my numbness had started to become increasingly uncomfortable, and I had started to lose some function in my hands. It was time for a trip to the ER.

   Its amazing how fast things happen when you walk into an ER and tell them your numb from the chest down. I didn't know what the big deal was, why was everyone freaking out? I had a full set of neck x-rays and was headed to the MRI machine within 30 minutes of walking into the hospital. Turns out things didn't continue to move that fast. After waiting what seemed like forever a nice doctor came in to tell me "we" were waiting for a neurologist. WOW wait a minute, a neurologist? Why do I need a neurologist?  Now I'm freaking out.

   When the neurologist, Dr.G, finally came in he did a few test, made some faces, and scribbled some notes, and scowled some more. I knew this couldn't be good. He said I had Transverse Myelitis, went on to explain what it was and then proceded to gloss over the fact that this "could be a sign of something else" and I needed to have some more tests done. Another MRI, this time with contrast, on my neck and one on my head along with a lumbar puncture. BUT he continued to reassure me that chances are everything would be fine.

   He told me I could do the high dose steroids if I wanted to but since it had been so long since the onset of my symptoms he didn't know if it would make alot of difference in the outcome. It was up to me. After doing some research and talking to a few people I decided to do the steroids. I'm glad I did/I wish I hadn't. Like I said before, love/hate. I swore I wouldn't ever do them again, but I will.

   I had my two other MRI's the following week after all the drama, because I don't have insurance, they wanted me to pay for it up front. Well that wasn't going to happen, I don't have that kind of money. They did the tests anyway. I found out later that because of my "diagnosis" they couldn't deny me treatment.

   My appointment with Dr. G was a week later and the rest as they say is history

1 comment:

  1. I received my diagnosis 2 weeks ago. I did the complete opposite of you... I vented it all out... I couldn't hide it and didn't want to. I don't know why but I wanted the world to know... I wanted the support.

    My most recent flare-up is starting to die down a bit. I too had the numbness and tingling from the neck down, dysfunctional gait (i walk like a drunk) and various other things...

    I'm glad I have found you! It's nice to know we are not alone in all this garbage