[Re-sent] October 16, 2024

Today's FUMS 6-Pack is brought to you by: Multiple Sclerosis. Without it - there'd be no need for this newsletter.Thanks, MS. 🙃

Hey - Well hello there. How's YOU? I - am - pissed off. 😡😡🤬.  I was scheduled for my twice yearly Briumvi infusion last Friday. I had scheduled it when I had my last infusion - 5 1/2 months ago. I sent notes through my doctor's patient portal to be sure everything was a go (this is not my first rodeo🐴) AND I had spoke with the infusion center twice to be sure we were on track (always call and talk to 2 different people to be SURE you're getting a straight answer). I even had an appointment with my neuro last week and we talked about my upcoming infusion. The afternoon before I was scheduled to get said infusion - I got a call from the infusion center telling me that they hadn't received a pre-authorization. It had to be in by 3:00 pm the day before. That call came in at 3:02. Umm - excuse me, what? 😳  I begged the charge nurse to give me until 4:00 to try to straighten it all out. Both my husband and I had taken the day off for this infusion. I NEEDED it to happen the next day. SEVERAL frantic calls later, it turns out, the preauthorization had JUST gone out from my neurologist's office 2 days prior - and the insurance company (who I was also speaking with) says it takes 7-14 BUSINESS DAYS to get a pre-auth approved. So - no infusion for AT LEAST 3 weeks. And then? Then I'll just be starting over to try to get scheduled for the infusion at the infusion suite. Who knows how long that will take. WTF?  So much is asked of patients - when we are at our most vulnerable. 

Do you follow Ardra Shephard?? If you don't - you should. I met her YEARS ago when I interviewed her for the FUMS Podcast Show. I believe I was her first podcast interview! People had told me I should meet her because we both had MS and potty mouths! She is amazing. Her blog "Tripping on Air" is insightful and funny - all about her life with MS. She's got a book coming out next Spring - "Fallosophy". It's a memoir based on her blog.  Please show her some FUMS love and support - and do yourself a favor: pre-order her book NOW: Fallosophy

Off to the races - 1. The National Multiple Sclerosis Society is awarding a total of $4.6 million in funding to advance research into how the protective myelin sheath that’s damaged in MS can be repaired — a step toward developing new treatments for the disease. *Why do I have the windshield replacement tune running through my head?? 🎶Safelight repair, Safelight replace🎶.  National MS Society awards $4.6M to 5 projects on repairing myelin2. I want to preface this next article to keep you off the ledge. These findings may well be because we are poked, prodded and otherwise watched so closely that any increase in additional diseases may well be because it would be found in us more readily. Deep breath.  Cancer risk slightly elevated in MS patients: 10-year study3. Do you or your relatives have UC - Ulcerative Colitis? This is an interesting article looking at the commonalities of the 2 autoimmune diseases and what risk factors they share. Ummm - yeah - no thank you. I appreciate the offer, but I'm just going to stick with this particular degenerative disease, but thanks for offering. Multiple sclerosis and ulcerative colitis: The link

Sometimes it helps the stress, just to say F-U-M-S

4.  BRUSH YOUR FANGS!! 🦷 🪥 "

Oral infections can trigger systemic inflammatory responses, potentially contributing to the development of systemic diseases."  

Multiple sclerosis and periodontal disease

5.  

The use of obesity medications — approved drugs for treating diabetes and promoting weight loss — is associated with a reduced chance of developing MS, according to real-world data from the U.S. Food and Drug Administration (FDA), a study found.  What WON'T these drugs do???  I'm interested but find it a little scary. How about YOU?  

Obesity medications linked to reduced chance of MS in real world

6.  MRIs. When you read that - what came to mind? For me - it's a freezing room, laying down in a casket of sorts, having a football helmet put on me (reminiscent of Hannibal Lecter in "Silence of the Lambs") and wheeling ever-so-slowly into the depths of a machine that clangs and bangs incredibly loudly and without benefit of any discernible rhythm. Oh yeah - and then there's the poison, I mean, "contrast" (gadolinium) injected into my veins and just hoping that nothing is "lighting up" and no new lesions are showing up! I imagine your vision was fairly close to my description. But did you know that there are real differences in MRI machines to take into consideration? Not All MRIs Are Created Equal

☝🏻that article reminded me that I have 3 MRIs next week. UGH. 😳

💰 *PAID* Research TrialsFrom our partners at Rare Patient Voice. This is just a sample of a TON of opportunities they have for a huge array of health issues - available all over the world.  You must sign up with RPV to be able to apply for any of their research trials. Sign up here: FUMS & RPV1.  Progressive Multifocal Leukoencephalopathy (PML) patients United States60-minute web-assisted phone interview, compensation is $1202.  Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing-Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States25-minute online survey, compensation is $503.  Alzheimer’s Disease or Cognitive Impairment patients and caregivers United States30-minute web-assisted phone interview, compensation is $604.  Rheumatoid Arthritis or Ulcerative Colitis patients United States30-minute online survey, compensation is $50

Kathy's Fun Finds and RecommendationsDisclosure: This post may contain affiliate links, meaning I get a commission if you decide to purchase through my links, AT NO ADDITIONAL COST TO YOU. It's getting a bit nipplie (oops - meant nippy! 😉) out there. Happy Fall Ya'll 🍁. This blanket belongs on YOU this Fall & Winter - wrapped up with a cup of whatever it is you prefer! Reading a book? Watching a movie? Thinking deep existential thoughts - whatevs! BONUS: it coms in MS Orange too!! 💛 *Click the picture to get one for yourself! 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

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