It’s Not Possible. No Way!

When I finally agreed to see a neurologist in 1998, that was my response to his “probable” diagnosis of MS.

I know that’s not uncommon but I actually was in denial before I ever got there. My sister had been diagnosed with MS when she was barely 20. She is two years older than me and my diagnosis was over ten years later. But wait, that’s not all! My mother was diagnosed with MS about five years before me. So yes, I had multiple years of living with a family member with MS. We all thought it was insane for mom and daughter, considering MS was not supposed to be inherited. I almost started laughing in disbelief when the neurologist actually said the words. (I think that’s a symptom too! Funny). My mother started crying, poor thing. I shouldn’t have let her go with me. Regardless, the doctor said it wasn’t unheard of but typically not immediate family. By the time anyone seriously considered volunteering for research, Mom was too sick to participate.

Mom passed away in 2013 in her sleep, thank Jesus. She had all the classic Primary Progressive characteristics with the worst of the disabilities. She was 69.

My sister has been following with almost identical if not worse progression and I am terribly worried for her.

I have always compared my situation to theirs, particularly from a chronological perspective. "What was happening to Mom at my age."

I have never really enjoyed reading about other people’s experiences, daily struggles, comparing. Mom used to gripe “If I read about one more person climbing Mount Everest or running a marathon, I think I will have to slit my own throat!” The whole support group thing sometimes just gets on your nerves.

I just joined the group and I am determined to become more comfortable talking about it. I guess in our family, the three of us has always been enough venting and crying.

I have read several personal stories and it’s all so familiar.

My disease experience has been quite different from my mother and sister. I am doing well, I think. So well that, other than managing medication, I pretty much ignore it. I haven’t had a neurologist since around 2005. I can’t even remember. My primary doctor took over when our regular neurologist left town. Now I am scheduled to see a neurologist in a couple of weeks. Maybe it’s aging, strong insistence from my other physicians, a few new minor symptoms. It’s just time to put on my big girl pants and go.

I have started a book about my family’s journey through this life. I really should write two. One would sound similar to everyone else, one not so much. My mother’s story is really sad and atypical. I plan to submit a little of it at a later time in this forum. I am really interested to find how frequently others have experienced severe frontal lobe damage and the psychological effects.

Also, ironically, I have been an RN for 27 years. The majority of my career has been in home health and many of my patients had MS.

That could be an entirely separate story! So, needless to say, I have had to live with and embrace MS from the perspective of a medical professional, a family caregiver, and a patient. But by golly I am a better nurse and a better person as a result. But I am NOT a very good patient.

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