I was diagnosed with Multiple Sclerosis in May of 2005. My experience with this disease has been very similar to many others that have written for Associated Content.
In November of 1998 my legs were acting strange so I was referred to a Neurologist. He really did not have any ideas as to what might be going on and had me to schedule an appointment in 90 days; February of 1999. When the first of February arrived, I was filling fine and decided to cancel the appointment.
Around the 21st of February my husband’s grandmother passed away. It was a stressful Sunday for the family even though the woman was in her 90’s. The next morning I woke up with a very strange sensation around my waist. Over the next three weeks we lost my father-in-law and I lost the ability to walk without the aid of a cane. I called the Neurologist, but had no success in getting an appointment anytime soon. I called my primary care physician and for the next 6 months I battled with doctors, having every kind of test done to receive no diagnosis, but to be told let’s wait and see what happens.
I spent the next 5 years trying to put this all behind me, not seeing a Neurologist again, and changing primary care doctors. My walking had recovered pretty good, I had a limp only occasionally.
December of 2004 ended any chance I had of not being diagnosis with a chronic disease.
While attending a Christmas party my leg brushed against my car, and the touch was extremely cold. When I touched the car with my hand it was not cold at all. I knew what was coming. I got an appointment with my primary care doctor who ordered MRI’s immediately. Once he got the result he immediately scheduled an appointment with a different Neurologist, but that appointment would not happen until May of 2005.
While waiting for the appointment my walking got progressively worse. During both of my exacerbations I received no steroid treatments, my body was having to fight this disease on its on. One day in early January, while at work, someone stepped out in front of me and I nearly fell in the floor. The work nurse refused to allow me on the premises until I had a note from my doctor saying it was ok to do so. My primary doctor thought this was the dumbest thing he had ever heard. He wrote the note and I was back at work by February, fortunately the worse was over and my walking was improving.
This episode left my left leg extremely weak. I walk steps one at a time, and must have a hand rail to even think about walking them. If I have a long day the limp gets more pronounced and people notice it. People will make comments about the limping and ask what’s wrong. I just simply answer, I have always had a limb it just a little worse today.
That brings me to my dilemma, Multiple Sclerosis, to tell or not to tell that is the question. Do I tell everyone that ask me what’s wrong when they see the limp that I have MS? I have tried that on some occasions and the people act like I have told them I am about to die. I have to remind people that Teri Garr and Montel Williams have MS but the reaction doesn’t change, they feel sorry for me, and that’s something I really hate. I am a type A personally, and have no intention of letting this disease get me down.
Do I not tell people, and then when I get out my car parked in a handicapped parking space on a very hot summer day, have people question why I am in this spot since I look like there is nothing wrong with me? Just because I appear normal when I get out of my car on a hot summer day does not mean that I will be walking normally when I head back to the car. Heat is the one thing that gets the best of me. When people give me those looks or even make comments, I wish for just one day they could have a disease that can not be cured or controlled. I would never wish for anyone to have to deal day in and day out with this disease. Those of us that have it never know what the day will hold for us.
Until there is a cure for Multiple Sclerosis I believe I will never have the answer to my question Multiple Sclerosis , to tell or not to tell?