Beware: long post :)
I have been meaning to blog this for a long time but kept putting it off. So here goes. (its only taken me 7 months to build the courage to write this) I want this for my records in case I ever forget any details because I feel I have already forgotten so much over the last few years.
This past February (February 18th to be exact) I was diganosed with Multiple Sclerosis (MS). This was by no means new news to me. I have suspected it for years. It has been thrown around by doctors but no one wanted to take the time to do all the tests and actually come to a diagnosis. Ever since I was in high school, I never felt "right". I can't explain it but I do remmeber being the only one of my girlfriends who couldn't lay out in the sun all day without feeling very sick. I just assumed I was a whimp.
In 2006 I was working for Verizon and I remember a lot of migraines. Sometimes my computer screen would go blurry (it was really my vision). I made an appointment with my primary care doctor to see what was wrong with my constant headaches. They sent me to a neurologisit. He insisted on an MRI. I remember the day I got it done, Zach and I were dating and he went in the hospital with me and waited :) When the results came back the doctor said he saw "something" on my MRI and said it was ocular migraines and threw me a prescription. I took it and filled it, no questions asked.
Months later the migraines were worse, no medicines help. The only way to rid them was sleep. The doctor just changed my prescription over and over. I eventually just gave up and just assumed I would have migraines forever.
In 2007 I remember taking a shower and my right foot was numb. I was very confused about the sensation, or lack there of. and then made an appointment again with my doctor. It was going numb and I had almost gotten in car accidents because I couldn't feel my foot. The doctor sent me to an orthopedic specialist who did a nerve conduction study and came to the conclusion that I had a "pinched nerve" and it was the reason for my numbness. The conduction study came back positive saying I had lost all feeling in my foot, this was his diagnosis. I went on with life....
2008 I got pregnant with Cohen. I felt GREAT! (you go in remission during pregnancy)
2009 I delivered Cohen and not 2 weeks later I was laying in bed extremely fatigued. I remember distinctly calling my mom telling her something wasn't right. I couldn't move. I could not lift my body out of the bed to tend to my screaming baby. Everyone kept assuming I was just tired from the nightly feedings.
I made an appointment with my neuro since my migraines were back, numbness was back and now i was so fatigued I couldn't tend to my own child. This was a new neuro and he did a series of tests. All negative however still decided to diagnosis me with Neurocardiogenic Syncope. I remember leaving the hospital and calling mom saying "I have a diagnosis!" I felt so relieved. Although it didn't make sense to me since my test came back negative but the doctors are always right, right?
2009 I noticed many other symptoms, my body felt heavy, alot. I was so sleepy I could fall asleep while driving, I literally needed 7 caffeine drinks a day to stay awake, no matter how much sleep i got. My neck buzzed when I looked down, I was forgetting things very easily, the list is endless.... I didn't feel "right".
2010- pregnant with Caleb, I felt WONDERFUL!! (minus pregnancy symptoms)
Until, I delivered him. Not a week later I had hemorrhoid surgery and an infected epsidomy that had spread down my legs. Wow some luck! PLUS All my symptoms were back. Geez! What is this!???
I have had a few doctors ask me if anyone in my family had MS. It was a 1 sec question out of the appointments so I never put thought into it. Wow, I had almost every symptom. No way I have MS I thought, I'm very very active, probably over active. People with MS don't move, they are in wheelchairs or use canes, or old. No offense. I go to the gym, I grocery shop 4 days a week, I run after Cohen, I do it all! Over the past 5 years I had doctors suspect anything from headaches all the way to Parkinsons!
January 29th, Cohens birthday. I remember his party so well. I remember speaking to Momaw and all of a sudden my drink fell out of my hands, it just slipped. I lost feeling in my hands. Then that afternoon I went grocery shopping, I thought I was alone and went into the store, shopped, took my time, etc. I got back in my car and heard a whimper. CALEB! Yes poor Caleb 3 month old Caleb was in my car. I took him to the store with me but FORGOT him. I then realized enough was enough I'm calling my doctor, now I am forgetting my children!
February 16th 2011, My mom was staying with me because Z was out of town for work and she was helping with the boys. I remember waking one morning telling her that my face felt weird. It was numb, but it hurt at the same time. My eye felt like someone had punched me. I went on about my day.
February 17th, 2011. I woke up and the pain was back in my face. WEIRD!
Next day, Feb 18th, 2011. I woke up, Z was still out of town. and my face felt like someone had beaten it! I was sure it was swollen and went to look in the mirror only to see it looked just fine I was so confused. I immediately called my mom and she convinced me to call a doctor and tell them my symptoms. I called my doctor at UVA and they instructed me to seek ER help immediately. I was dumbfounded. I felt fine besides the pain, I even drove myself there.
I got checked in and told the doctor what I was feeling and they immediately told me I needed an MRI because I could have suffered a stroke, I kneewww it wasn't a stroke. I knew what it was. After hours of the ER the doctor came back in my room holding my MRI and said "You have MS". "There are at least 7 scars on your brain, aka lesions) I wasn't even with my husband during this, he was on his way back from Ohio. I just sat there and smiled. He looked at me as if I was crazy and I said "thank you, thank you for taking the time to do the test and diagnosis me" He explained that before insurance would give me medicine (shots) I had to do a few more test for insurance reasons to show that I 100% have MS, medication for MS is over 2,300 a month, its nothing they can just give "just in case". Over the next week I got 19 tubes of blood taken and a spinal tap done. A spinal tap is where they stick a 9 inch needle in your spinal cord and take cerebral fluid from your spin. Very uncomfortable.
The doctors nurse called me at 4:34pm and said "Dr. Staykov needs you here at 8am" I knew this was just the confirmation that insurance needed to start my treatment. He told me... in 6 minutes... that I had MS and I was to begin Copaxone injections daily. And off he went to his next patient..... I left again, dumbfounded. I had so many questions, that remained unanswered. Luckily I had my appointment at UVA the following week and that doctor took the time to answer every question I had : ) Plus the help of google!
March 23rd is when I began Copaxone injections which is a shot daily. I administer it into a fatty area, no problem finding that :) It has become a routine of mine. I brush my teeth, I put on my PJs, I wash my face and I give myself a shot (I even tease Zach that one day I want to give him one, just so he can feel what it feels like, hehe)
In the past 10 years.... I have seen over 6 doctors, been given 7 different diagnosis, been pregnant twice (for some reason when you are pregnant your MS symptoms disappear!) I have had the symptoms come and go. With that being said.....I still live my life to the fullest, I am NOT dying, I am not disabled. People may be confused why I have such an upbeat reaction to this... if I lived in a third world country, i would never get diagnosed, let alone treated. My body would probably deteriorate and over years I would be unable to move or function. But luckily I live in a country with machines, doctors, tests and treatments! Not only that but I have an amazing family and church body who would do ANYTHING to help me when a relapse hits. Not everyone can be so lucky. I have an amazing God, a loving husband and two precious boys. Life can't get any better. I may have scars on my brain, but not my heart.
I know our two boys will be so supportive and loving like these two are. Watch this :)
beware, you may cry. amazing.
