About Me

  • Gender Female
  • Age 81
  • Relationship Married

My Story 0 Appreciate this

The first symptom I had was when I had trouble exercising. I had been running 3 miles/day and found myself going slower, walking more and not being able to go far due to fatigue. In 1981 my PCP diagnosed me with carpel tunnel syndrome due to numbness in my hands and sent me to an orthopedist, who immediately sent me to a neurologist. Tests showed that I did not have carpel tunnel syndrome and several CAT scans showed an abnormality in my left forehead. He finally talked me into being admitted to a hospital where I read on my chart that he suspected I had a brain tumor or aneurysm. I spent 2 weeks in the hospital with a lot of tests being done--the worst was a brain angiogram and a myelogram of my spine even though the doctor admitted they had nothing to do with my numb hands. In 1981, with no MRI available, he finally ruled out everything else and said I had MS. I did not know anything about that but thought it sounded a lot better than a brain tumor or aneurysm. About 3 months later I had a very painful episode of optic neuritis in my left eye which was resolved with prednisone. I had shocks throughout my body when I bent my head down, tight banding around my chest, with the numbness moving up and down my arms. Sometimes I felt like my feet were on fire. Mostly I felt like someone was playing a lot of not funny practical jokes on my body. My children were in junior high school; we lived on a cattle ranch and since I was not in pain I was pretty well able to just ignore what my body was doing. My husband traveled 5-6 months/year so I took care of the kids, the cattle, goats, hens, etc. When the girls reached high school they attended school in Dallas at the Arts Magnet. I had been in a class to learn braille and got a job teaching in a wonderful pre-school for blind and multi-handicapped blind which was very close to the their high school. After a number of years when my MS worsened, I worked part time in the school and part time in the office where we brailled textbooks for the state of Texas and eventually took over the job of braille coordinator. I was working at least 60 hours/week and when my MS became progressive and I could no longer work those hours I was fired without cause. I collected unemployment for 6 months and then my husband who had retired and I set up our own braille business. Due to cognitive problems I retired in 1998. Since I was 60 years old when my MS got much worse I feel very fortunate that I had time to do so much that I enjoyed--raising kids, gardening, ranching, traveling, hiking and back packing in the Rock Mountains, living on an island on the east coast -- I do love the beach--living in the woods. I grew up in Kansas with little water and few trees. Now my mobility is very limited and my husband is my caregiver. I cannot drive. I am very isolated and really do not have friends except for people with MS I have met on the internet. I am hoping this group will let me meet others who have lived for a very long time with MS. And I hope that newly diagnosed people will know that it is possible to live well for a very long time with MS. Especially with the drugs that are available now.

My MS

Type of MS Secondary-Progressive MS (SPMS)
First experienced symptoms1978
First Diagnosed 1981
Symptoms Fatigue, Numbness, Walking (Gait), Balance, & Coordination Problems, Bladder Dysfunction, Bowel Dysfunction, Vision Problems, Sexual Dysfunction, Cognitive Dysfunction, Spasticity
Treatments Exercise, Physical Therapy, Vitamin D, Yoga, Clonazapam, Low dose Nitrofuran,Imipripramine

Interests

Living Well with MS Emotional support, Healthy living, Mobility and accessibility, Relationships and intimacy
Research Research news
Hobbies and other interestsReading, Bird watching

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