We all have a different story. This ms monster puts us all on a different path but I thought that sharing some of the data below might help some of the newbies here deal with the unknown. So here a recap of how long, how much, how many of everything and anything since my first noticeable symptom:
- 4 months: from first noticeable event (double vision) to diagnosis (Jan to April – I kept pace with appointments but it takes 3+ weeks to get an MRI scheduled, so it all adds up).
- 2 months: from diagnosis to first treatment (this could have been shortened but I was busy)
- 6 months: from first event to first treatment (Jan to Jul)
- # of neurologists seen: 3
(1 for the eye nerve, 1 general neuro (x2), 1 ms specialist)
- # of MRIs: 3 (one of the optic nerve; two complete ones of brain + spine)
- # of lesions: >20
- # of blood tests: 50+(?). At one appt, the nurse pulled 18 vials of blood
- # of times they poked my arm: 6 times (MRIs + blood)
- # of vaccines done: 3
- # of hours searching on the internet: 100+ hours (2 months x 2 hours per day)
- # of questions: 200+ (2 per day during that time)
- # of years I had ms before this diagnosis? My answer landed on “Useless question”. It could have been 3, 10, or 20 years; ignorance was a blessing. I’m glad to be diagnosed when DMT is available.
- # of people I told: 3 friends (not necessarily my best friends, just good people who were around and open to listening), 3 in my family (my brother and my two sisters), 0 at work
- How often do I think about it: 100% of the time, except at work when I’m really busy.
- # of weeks before I could think about it without crying: 3
- # of weeks before I could talk about it without crying: 6
- # of heat waves survived: 1 (1 too many). Never again.
I feel deeply sorry for my fellow ms'rs who live in hot parts of the country.
- # of int’l 10+ hours trips taken: 2.
eventless
- What has changed in my life: nothing and everything at the same time
- Cost of diagnosis: $20,000+ paid mostly by the insurance
Two things I learned about my MS during the move:
Question for everyone about diagnosis of MS
the progressive nature of ms
My 1st paint by numbers!
Stopping My MS Therapy
