Living with Multiple Sclerosis

My road to diagnosis was bumpy to say the least…I was only 23 years old when I had my first contact with MS It was pretty scary actually. I woke up one morning and the vision in my eye was gone… well not totally gone, but it was very dark in the center of my eye and my eye hurt like crazy… I called my eye doctor and he told me to “come in immediately”. I went through a battery of tests and it was determined that I had Optic Neuritis.

I was immediately given a round of steroids IV and referred to a neurologist. The next day I was scheduled for an MRI and had more steroids. I saw the neurologist the following day and (had more steroids) he told me to go home that my eye was cleared up and that the other symptoms I was experiencing (numbness in my legs and hands was in my head). I was 23 so I believed him and went home. After I took the steroids my eye problem had cleared up and I was feeling better so all was fine…Or so I thought… in December of 1999 I was at home getting ready for the holidays and I fell for no reason, and when I tried to get up my leg was numb and tingly. My toe hurt like crazy and I couldn’t move it so I went to the doctor….I told my GP about the numbness and tingling and she sent me to the Neurologist again.. he didn’t order any test and told me I was making it up and that I should go home and rest and I would be fine.. I knew there was something wrong with me so I found a new doctor.

I explained my symptoms to the new doctor and he immediately ordered a MRI. He reviewed the MRI and told me that the results we indicative of MS but wanted to run one more test just to be sure. He sent me for a spinal tap. I went for the spinal tap and had a really hard time with that. I had to go back in because I was getting really bad headaches and needed to have a blood patch placed and lay on my back for 3 days. I went back to the Neurologist and got the result … MS.

At least now I knew what it was…he gave me steroids to relieve the inflammation and I was feeling so much better. I had a little lingering numbness and I was tired (MS fatigue) but all in all I was fine for about 4 years and then I had another flare up. This was about 6 months after my son was born. During my pregnancy all of my MS symptoms disappeared. I had so much energy and no numbness at all (if I could be pregnant for ever maybe my symptoms would go away). I was again treated with steroids and that “kicked my symptoms into remission”.

I again was fine for about 3 years and am currently experiencing another relapse. I am numb and tingly form the neck down, but the fact that I can’t feel my legs is the worst. I am currently being treated with steroids and am going to have another MRI This is just the way it goes I guess a rollercoaster of feeling good the feeling bad.

You may have noticed that I don’t mention having been on any of the “MS drugs”. I took Copaxone for a very short time, but it was so expensive that I cannot afford it (and who wants to take a shot every day OUCH!). Insurance doesn’t pay for it and I can’t afford it on my own. I have made a personal decision to treat my relapses instead of taking one of the MS drugs.