It started in 1997 while I was in Bible college. My left eyelid started twitching like crazy, nonstop, and my left eye went blurry. This lasted a couple of weeks, and so I went to the eye doctor. He told me it was stress and to go home. I believed him because in college you always have stress.
In 2000, my left pinkie finger went numb and then it spread to my hand and up my left arm. I was extremely tired and had a lot of pain – like shocks of electricity running though my body. I saw a doctor. He ran blood work, and eventually (after a couple of months) ordered an MRI. He said it was “relatively normal” and then asked me if I knew I was pregnant. I did not! He told me that my body must be making too much fluid and it was pressing on my nerves. When I was about 4 months along, I felt back to myself.
Throughout the next years, I can see small episodes that occured although I would have never put them all together. Hindsight is always 20/20 you know!
In June of 2007, I had my 5th child. Ever since she was born, I could not get any energy back. I was always so tired! At firt, I thought that was because I was a busy momma and she was a nursing baby. She cried for the first 6 weeks so that will certainly make you tired. Every day, my husband would let me sleep in, I would take a 2 hour nap in the afternoon and be falling asleep in the evenings until I would go to bed early. By the time she was 7 or 8 months along, and sleeping peacefully through the night, I begin to wonder what was up with this awful fatigue. In May, I begin to experience that awful pain again. It is hard to explain but once you feel it, you will never forget it. I immediately recognized this pain as the pain I had in 2000. So, I therefore assumed that I was pregnant. After 2-3 different months of pregnancy tests (that were all negative), I decided that I had better see a doctor. I figured that my system was out of balance after having babies and I probably just needed some good vitamins to boost me back up again. By this time, I was also experiencing numbness again, this time in my right arm and toes. I was also having touble with keeping my balance. I was not dizzy, I just couldn’t seem to stand up straight without feeling like I was tipping over.
On my first visit to the doctor, he asked me if I had ever heard of Multiple Sclerosis. I told that yes I had and was tested years before but I was only pregnant. He then asked for that story and said that he didn’t want to scare me, but that we were going to have to check into this. He wanted to run blood tests first and rule out some simple things like thyroid and Vitamin D and B-12. After seeing the doctor several more times, he became convinced that we were dealing with MS and wanted me to see a neurologist.
Off to the neurologist I went with more blood work to rule out other disease that mimic MS, and neurological examinations and lots of questions. By the second visit, they told me that they were 99.9% sure that I had MS. There is no single test that is available to diagnose so different neuro’s diagnose different ways. Most have to follow what is called the McDonald criteria which has several different things that they look for. They told me that I met all of the criteria except one – finding lesions (scars) on my MRI’s. They also told me that some people don’t show these scars for awhile and some people never show them at all. Since they are a MS Center, they said that their job is to get people on the shots, have them come back every 6 months or so for more MRI’s to see if your progressing and then tell you if they think you are or not and if the medicine is working or not.
I had already decided, after researching the medicines available and the statistics that go with it, that at this point I will not take the meds. I know they have helped a lot of people, but there are also a lot of people who have not been helped at all. Since MS is such an individual disease and hits every single person differently, then they are not 100% sure if the meds helped or if that was just their version of the disease. The risks and side-effects sounded a little more deadly to me then MS, so for now I am steering clear of them. I am seeing my regular doctor, who I have 100% confidence in, to manage my symptoms. I figure I know my own body better than a doctor will in terms of me progressing or not. I reckon I won’t need an MRI to tell me if I am worse. I am pretty sure I will know.:) This is all a very personal decision and I would never tell someone else what they should do in the same circumstances. I just know this is the way I am going to go. Since there is no cure for MS, all they can really do is to monitor you. So, I will be a student and learn all I can about it and listen to my own body. The rest is in the Lord’s hands.
As far as where I am now…there are so many things that are not the same since May. I have a friend in England who has MS and we have decided that it is like going through an identity crisis. “Who belongs to this body that I now have? It certainly isn’t me because it is nothing like I was!” The Lord helps you adjust though. Though I might add, I am afraid that at times I do not adjust very gracefully! I believe this is my “new” normal. Even in this new normal, there are days when I am better and days when I am worse. I have the most fits with my legs. They are weak and wobbly feeling all of the time. I just can’t be on them for a long time or they just start giving out on me. Next would be my balance, and then the tremors and spasms I get in my arms and legs. I do have areas that are numb but that is more of a nuisance than a true problem. I am in pain probably about 90% of the time but mostly I try to keep my mind busy and not think about it. Night’s are worse because you are trying to go to sleep, not keep your mind busy! Thankfully, I have been able to stay medicine free so far. Although, I will admit that many times had it been in the house….but you always hope tomorrow will be a better day and you get through it.
There are so many other crazy things that happen on and off that you just grin about it and nobody would have a clue what you were talking about unless they had MS and know that it does whacky things to you!:)
So, this is the story of my journey so far. A trio that I used to sing in sang a song called “My Life Lord Is Your To Control”. The chorus says:
My life, Lord, is Yours to control,
I give You my heart and my soul,
I’ll seek Your will, never mine,
Rich treasures to find.
Give wisdom to choices I make,
Along every path that I take,
So when I complete life’s race,
“Well done”, You will say.
This path has already handed me treasures, things I have learned, going through all of this. I hope to be able to share the things I have learned and what I will still learn. My life is truly in His hands.
On March 12, 2009, after having pink eye for a couple days, I woke up completely paralyzed. I was eventually diagnosed with Idiopathic Transverse Myelitis which damaged my spinal cord at the C5-C7 level and rendered me a incomplete quadriplegic. However, my functional level is more of a thoracic level paraplegic. It never was MS and that is why they didn’t find the lesions on my brain. My body was attacking my spinal cord – not my brain. They never checked my spinal cord. The pink eye was the final straw.