April 24, 2024

Hey - How's things? MS getting on your last nerve? *See what I did there? Yeah - me too. I've had the worst cog fog of my career as a professional MS'er (dx'ed 16 years ago) for a MONTH. UGH. It's awful. It's embarrassing. It's MORTIFYING trying to work. The word fishing. The getting completely lost mid-conversation. The complete lack of memory. Well - I know one thing for sure: ummmmm, wait, I DID know one thing for sure. Damn it, what was the one thing I knew for sure? 😉Let's see what's been going on in our MS world, shall we:1. This could help with earlier diagnosis - which means earlier treatments - which means less progression - which means FUMS! Thanks for riding my MS brain train there!! 🚂 Signs of MS may be visible in blood years before first flare-up of symptoms2.  Hey Ocrevus peeps: I'd love to hear from you. Does this track with your experience? And, while the clinical relapses may be less - how are you FEELING??  I mean - aside from the "crap gap"? 😜 Ocrelizumab Demonstrates Near-Complete Suppression of Relapses for Multiple Sclerosis3.  I bet I get at least 1 question per week about pregnancy and MS. It's a big deal. It used to be that you simply went off your meds during your pregnancy and really didn't dare breastfeed while on the meds. Things have changed. There are new protocols for family planning and MS. While I felt GREAT when I was pregnant (many of us do), immediately after - as I know now - I had flares (not yet dx'ed). So - keeping that timing in mind, there are better plans available now to women with MS who want to get pregnant. Here's a video about it:  Pregnancy and Lactation in Multiple Sclerosis4.  🎼"Baby You Can Drive My Car"🎶 - unless you have MS because, according to this study (and my insurance company), those of us with MS don't drive so good . . .🚘 🏁  How Multiple Sclerosis Affects Driving Simulator Performance5.  I feel this one. Along with the cog fog and the fatigue and the pain and the numbness and the tingling and the - need I go on? Along with all of that stuff we deal with - there are those "unmentionables" like sexual dysfunction and bowel and bladder issues that people are embarrassed to talk about and doctors don't often bring up. Well - I'm here to tell you - it's a very high percentage of MS'ers that deal with these things. This veil of silence pisses me off. I'm looking at putting together a webinar over Zoom with some experts in these fields to answer questions and provide knowledge and real HELP. Please hit reply and let me know if you'd be interested in this. If the interest is there - I'll make it happen. Meantime, read this: MS patients ‘too embarrassed’ to speak to doctors about some symptoms  AND check out the ebook my pal (and pelvic floor dysfunctional physical therapist) Erin Glace and I wrote together (click the picture): 6.  And finally, a shout-out to my fellow Briumvi folks. Here's a real shot in the arm (😉) for this relative newcomer: TG Therapeutics Awarded National Contract by the Department of Veterans Affairs for BRIUMVI as the Preferred Anti-CD20 for Relapsing Forms of Multiple Sclerosis.  If you're on Briumvi - hit reply and let me know what you think. OK - that's all folks. Let me know if you have any questions or if I can help you in any way. Otherwise, just keep saying FUMS!! 🧡Cheers -- KathyKathy Reagan YoungFounderFUMS

Upcoming MS Events

: MSAA's 10th Annual Improving Lives Benefit - May 15th - Philadelphia, PA Race to Erase MS Annual Gala - May 10th - Los Angeles, CA (MS forum on May 11)

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