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kimmyk

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"Maybe the waiting is Karma's way of reminding me not to take DMDs for granted? For the last 6 or so years I've been on Tysabri, which I've told to anyone that would listen (and some who didn't)- Tysabri gave me my life back!!! Almost immediately after my first infusion I felt better, soon after I was incredibly fortunate to have leasions shrink & experience reversal of symptoms. For several years I felt so "normal" I almost forgot about MS. COOL, RIGHT?? In 2017 my disease progressed by symptoms mildly reappearing although MRI is still good. July 2018 I had my first flare in over 5 years - mild optic neuritis. March 2019 I went from JCV- to off the charts JCV+. Now the fun (sarcasm) begins. April was my last Tysabri infusion; sniff so long 'ole friend, thanks for the memories. After a grueling amount of research I notified my MS Specialist in late April that I'd chosen Ocrevus as my next step. Here we are, July 13th and I still haven't been infused yet!! I'm scheduled for Tuesday morning- finally because I feel like crap! My fatigue is again off the charts despite my daily dose of modinifil, my bilateral hand pain is back in full swing & not waned despite my pain patch and oral pain meds, Anterior uvitis showed up Wednesday and today's guests are left sided trigeminal neuralgia and the newby of the bunch: upper abdominal pain that radiates to my back, with just the slightest touch to my abdomen I'm in terrible pain. I must admit, I had surpressed how incredibly crappy I'd felt before Tysabri but I never, ever took it for granted. Blessings to those who are able to live w/o DMDs, I am not one of them. Thanks for the opportunity to vent among those who understand xo"

About kimmyk

  • Member Since 2018