I'm Doing Relatively Well
Last updated: June 2023
I was diagnosed in 1985 with RR MS, had head-to-toe symptoms, mainly sensory symptoms, although my balance was impaired. I worked full-time post-diagnosis though in those days there were no treatments for the MS, just symptomatic relief through various medications such as Symmetrel, anti-depressants, pain pills, and prednisone.
I have tried many DMDs
Since then I have been on almost all of the various treatments, including Betaseron which I could not tolerate due to escalating liver enzymes and depression, Avonex for two years, but the flu-like symptoms and migraines cut my good days down to three per week. After that, I used Copaxone and that really helped without side effects except for some site reactions sometimes, and later noticeable dips in my skin from the fat cells being affected. When I was developing progressing double-vision, my neuro put me on Novantrone to slow the progression. Finally, it stabilized and I now wear prisms in my glasses that correct the double vision. Only when I get extremely fatigued the double vision gets worse (as do other symptoms). I've had them all but I've also developed many coping strategies.
What has helped me cope
Many times I find putting on upbeat music and rock 'n roll from my teeny-bop years puts a spring in my step and a smile on my face. I do water-workout twice a week at the Y (they have scholarship aid for those who cannot afford the fees). The social camaraderie is as beneficial as the exercise. I highly recommend it!
Navigating Trigeminal Neuralgia
Recently, I've been plagued by the pain of trigeminal neuralgia "TN"(facial pain) treated by anti-seizure meds (and in the past some mildly invasive out-patient surgery). I'm in the midst of an exacerbation and just had IV Solumedrol infusion yesterday. I was pretty wired and stayed awake until 4 Am, but the pain was greatly relieved. Now I'm on a regimen of anti-seizure meds that are doing the job. I say, a day without pain is a GREAT Day :-D. I can smile and brush my teeth again :-D.
Setting myself up to navigate my cog fog
I have some mild cognitive deficits which I try to get around by making lists, having a central place for my calendar which I check each day, and always putting things back in the same place. If I move stuff around, I'm lost! My attention span for certain things like driving is limited. I only spend a maximum of driving at a time of 30 minutes. A trip longer than that requires more planning and usually a passenger who can watch out for road hazards I might not notice.
My support network has meant the world to me
I'm a widow, but thankfully, since March I have a partner who is very understanding and attentive. Plus I have a support group of friends willing to get me to my medical appointments. I am grateful for all my blessings (two wonderful daughters who unfortunately live in hot places) and grandchildren. Plus friends who share my interest in art, music and creative writing. Life is full and even if I can't always participate, I know that the down times are temporary. This, too, will change. Always gratitude for life itself and the beauty around me keeps me going.
I'm glad I found this group.
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