Rachel’s Story

rachel-imgThe first memorable step of my journey with multiple sclerosis began while on vacation in Florida with my family when I was about 14 years old. I remember riding on the beach in a golf cart, wondering why I could hardly sit up straight, why I felt so tired and generally unwell, wondering why I couldn’t see right. Flash forward to the summer of my twentieth birthday, when I woke up with pain in my left eye and unable to see. A trip to immediate care sent me to an opthalmologist, who in turn recommended that I get an MRI of my brain. I got a call to come back to the opthalmologist’s office the following day for some more testing. The next day I had more testing done on my vision, followed by the staff handing me a manila envelope, and telling me that I needed to go to see a neurologist at Buffalo General Hospital.

As soon as we got to the car, I opened the envelope and read the contents. The only words I read among the medical jargon, in all capital letters, the MRI report read “PATIENT HAS LESIONS CONSISTENT WITH MULTIPLE SCLEROSIS”. Reading those words, my world slowed down so much in that single moment that I can still feel how bright the sun was that day as if I was still sitting in that passenger seat with the sun beams beating on me through the windshield. I thought my life as I knew it was over, and all my dreams for the future were futile.

I started disease modifying medication (Avonex) following my diagnosis, along with steroid infusions. For the first year or so, things felt pretty awful. Physically, I felt worn out by each new symptom I felt (which in that first year had more new, and at the time frankly disturbing, symptoms than I have had since. Maybe I’m just more adjusted to having symptoms now) – two more bouts of optic neuritis, tingling in my hands, insurmountable fatigue, feeling an electric shock run down my back and legs when I bent my head forward. Mentally and emotionally I felt exhausted and unsure of how I could manage if the rest of my life was going to be like this.

Luckily, many of my symptoms became more manageable as time went on, and I reached out and met other people with MS who gave me support and hope that things could get better as long as I just held on a little longer. Since my diagnosis, I have also made an effort to eat well and to exercise more than I probably would have if not for my MS. Since my diagnosis, I have had some of the happiest and best times of my life. MS did not make or break my quality of life, but rather has given my life a new dimension. I try not to look at it as a lifelong curse, but as an opportunity to learn things about myself and others that I never would have been exposed to otherwise. My hope and my goal is to help other people diagnosed with MS to know that they are not alone, to help lessen the feeling that there is something irreparably wrong with them, as I felt when I was newly diagnosed. I hope to assist other people in making the transition from the life before MS to the life with MS easier and less lonely. There are still times when having MS is hard – it is not all sunshine and roses – but it is manageable at this time in my life, and I am deeply grateful for the people and experiences having MS has guided me to have. My message to a future young person who is lost in that pit of major life change that is an MS diagnosis, I feel it is my debt to be there to lend an ear, a helping hand, to connect them with resources; to give them hope and instill in them that life is not over, things can always get better.

One Response to “Rachel’s Story”

  1. patricia harshman

    I was wondering what were your first signs . I am older than most when diagnosed I have had my eye doctor for the last 4 years tell me he thinks I might have ms because I have blured and double vision a lot. But I feel week like I can not lift a coffee pot full of water. I can not stand up if squatting I have to be able to grab hold of something to help pull up while pushing with my legs. I also have pins and needle feeling in my legs my hands cramp a lot. I am just tring to find a place or stories of signs and symptoms that real people had and felt b-4 they ever got diagnosed. My symptoms seem to come and go. I have a really hard time with heat in the summer like a few degrees makes me just sweat and get very irritated. Is there anything you can tell me or direct me to a sight that people actually state problems they had and noticed before being diagnosed. thank you

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