About Me

  • Gender Female
  • Age 62
  • Relationship Domestic Partners / Common Law

My Story 1 Appreciate this

My first symptoms started 29 years ago with vision problems. I was diagnosed 4 years later by seeing an Optomologist who said it was probably MS but put me through all the tests. I next saw a neurologist who did a spinal tap because there were no MRI's in those days. He told me he was 99 percent sure I had MS and that there was really nothing I could do except go home and read a book he gave me. Wow!!! How times have changed. My experience was so strange that I didn't pay too much attention until the next year when I lost the vision in my right eye and then could hardly walk because of the pain in my feet. I still didn't see another doctor because of the way that first one just blew the whole thing off. Ten years later I went to a new doctor for a regular exam and in the medical history I mentioned the MS and he took one look at me and said "Hmph, you sure don't look like you have MS" so of course I thought what the heck? Did I really have this or not? I then found my neurologist that I am still seeing and on my first visit he listened to my symptoms and what had been happening for the last 10 years and set up an MRI but said there was really no need because I was a text book case. He took the time to explain the disease to me and I realized that a lot of the things happening with me were symptoms and I had no idea what they were. I have been taking Avonex now for 15 years and it has helped slow the progression. My newest challenge is the scariest for me. I have memory and cognitive problems that affected my job and my everyday life. I am in a great relationship and he is very supportive and understanding but still does not really understand what he does not see. Of course this can cause frustration for both of us but we talk through it and that helps. My advice for anyone new to this is to be sure you are with a doctor you understand and that understands you, if you have to change a few times it's worth it to find someone that you are comfortable with. I have not always shared a lot of my story with many people and look forward to reading other experiences and sharing some of mine.

Interests

Living Well with MS Caregiver Support, Employment and education, Emotional support, Insurance and money matters, Healthcare
Getting Involved Volunteering
Research Research news
Hobbies and other interestsI love to play Bingo.

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