Super Mom

Super Mom
Flying with MS
I hope you find some humor, information or a smile for your day. If you are reading this, you may have MS or know someone with MS. The main thing to remember is we are normal people who learn how to go about our daily lives in different and sometimes unique ways.

Sunday, February 15, 2009

Multiple Sclerosis felt like Quicksand

How I got out of Quicksand!

Have you ever felt like you are in Quicksand? No matter what you try, you keep getting deeper and deeper and you have more trouble moving and you start to struggle breathing. I was sinking as I tried different training to improve my leg strength and stop my walking problems.
I found out I had Multiple Sclerosis after 20 years of different symptoms. I was finally diagnosed thanks to a caring and dedicated physical therapist I will call Susan. First off, I am a unique patient who has had multiple injuries over the years which led to my habit of always playing off my symptoms as some other part of my body acting up. However the time came that I could not over compensate for it any more.
Quick history: At the age of 15 I had my first ACL knee surgery. Yes, my average basketball career was basically over. Four years later I returned to the Orthopedic Doctor because the opposite side of my body was numb. He sent me to a neurologist who for some unknown reason insisted on 2 different spinal taps in six months. THIS IS ONE TEST THEY WILL NEVER DO ON ME AGAIN! An MRI, which was then called a NMRI because it was so new showed nothing. MRI and spinal taps with no evidence or traces of anything significant led the doctor to say that he was calling it one time MS. I was told to call him if I had any further trouble.
After graduating from college with a degree in Chemistry, I was well on my way to make it in the Sales World when I had a bad case of optic neuritis. The Optic Neurologist that I was referred to was very rude to my Mother when she asked if the eye problem could have anything to do with my one time MS. We were told to worry about getting my eyesight back and nothing was ever said again about MS. My sight did return completely with no permanent damage.
At the young age of 26 I had spinal fusion for degenerative disk in my lower right spine. Everything was fine after the surgery. I became pregnant with my first child at 29 and had no feeling on my right side and my hand for the last part of the pregnancy. My OB-GYN thought it was probably my weight gain and the pressure of the baby on my spine so I never thought about it again.
Another child later and more ACL surgery (2 to be exact) led me to the mindset that every time I had numbness, or extreme dragging of my legs it was because I was overcompensating for a "STILL" bum knee. Several visits in 2008 to who is now my current orthopedic doctor resulted in a MRI of my lower back and many x-rays. The result of this imaging led him to say nothing was wrong with my back or my left knee. He stated that I had hip bursitis on my right side and he thought physical therapy would help.
Therapy did help a great deal. We started off making the hip flexor stronger and then moved to quad flexibility. The whole time this is going on, I am continuing to work out with cardio and weight training so my problem was not overall strength but specific problems with my hip flexor muscles and coordination. Months of working on these things led to a routine of working on “Fast Twitch” muscle reflexes, balance, and gate problems. I was going along fine and really felt like I was coming out of the “funk” I had gotten in.
Six months after starting physical therapy, I went to my session one day and I was having a hard time walking. My hip was making me drag my right foot or swinging the foot out to prevent it from tripping me. Yes...Tripping on my own feet. Susan asked what was wrong and I told her I was having a real problem with my balance, coordination and my foot was dragging because I could not really feel it or my right hand for that matter. She decided to do some test on me. A few test later including closing my eyes and almost falling led her to say, “I am going to call your doctor, you need to see a neurologist.”
I went home and told my husband what she said and he asked if I thought it had anything to do with the doctor who thought I had MS in College. I just laughed and said NO! Then I called my sister and she asked the same thing and then I said I did not think so. One hour later after looking on the computer and reading as much as I could in that time, I knew I had Multiple Sclerosis. I started putting everything together that I had experienced over the years. I had moved 6 times since I had seen the first neurologist and had seen a few doctors along the way. There was no one person who truly had all the information except for me and my memory.
I met with a very nice neurologist whom I liked from the minute he walked in the room. After my initial appointment with him he asked if I knew what I had and I said, “yes, and you also know that I have Multiple Sclerosis.” I knew it in my heart and he said we needed the test to confirm what we both knew. He said we would get an MRI of my head and spin and start treatment as soon as the results came back. I left his office with an appointment for an MRI, a follow-up appointment with him and lots of information from various drug companies who offered treatments to lengthen the time in between exacerbations.
Now here I am today and I am no longer sinking in that quick sand. I feel better than I have in years and I know what I am fighting. My journey will be long and it will be difficult at times but this will not beat me and I am going to fight this with everything I have.
I wish there was an easier way to keep others from ever feeling the pressure and hopelessness of being in Quicksand.

Joy A.

1 comment:


Hi Joy,

I've just come across your blog through your following of another MS blog. Welcome to the MS Blogging Community which has some really great folks here.

It looks like you are still newly diagnosed although you've been living with MS for a while. I had my first MRI while in grad school, but wasn't officially diagnosed until 12 years later.

So glad that you are no longer in that Quicksand.