Once upon a time, long long ago...
I'm 58 years young and was diagnosed with RRMS at the tender age of 25-ish, before MRI was being used. Based on multiple factors my GP/PCP tenderly "diagnosed" me - accurately! - before sending me to a neuro who (in 1980) didn't have a whole lot to offer!
RRMS however was kind: It relapsed (blind!) remitted (fine!) relapsed (legs!) remitted (okay!) and stayed pretty benign. My parents lived close by and helped ALOT.
Flash forward to the New Millenium when (20 years later) symptoms and exacerbations increased in frequency and intensity-- yet I was still able to "hide" and work full-time until 2010. Now on Disability, I am still relatively "healthy" (if you call debilitating fatigue, vertigo and double vision 'healthy!) and live independently. So far.
I typically skip most articles about 'symptoms,'etc, since I feel I know as much or more than the 'experts!" I am in the capable hands of a world-class MS Center in a large city; have been treated like gold with the finest of care. I did Copaxone; quit DMD's reluctantly since '06.
It has taken me two years to adjust to being home all the time without work - it's not all bad to go shoe-less, bra-less, etc., or to sleep as late as I want! But quality of life is an issue for many of us: the isolation; the typical DECREASE in income, and/or dependency for help. Grocery shopping is a killer.
I am so fortunate to have friendly, helpful, compassionate neighbors; a daughter nearby, and a decent credit rating for "when life happens!" I count my blessings daily and there are many. At least as many blessings as there are PILLS!
My hope for the near future is that BG-12 (if that's correct) becomes FDA-approved as my neuro has offered it as the next line of therapy for me. Fingers crossed for it to happen soon.
I trained as a "peer counselor" with the MS Society before I became disabled so I feel able to talk with others if they need to vent/talk/ask questions.
Between my 30 years' experience with MS and my own aging, I anxiously watch the National and international societies for news and updates. Happy to find this site!
Thanks for reading; I'm just so BLABBY after my coffee!
How many specialists did you see before finding "The One"?