September 6, 2023

The FUMS 6-Pack is HERE 🍺🍺🍺🍺🍺🍺

 

Hello friends --It's been a minute!  I've been VERY busy. I sold my house and I moved. And that was a lot. Whew! Glad that's behind me. Then it was time for my 6 month check in with my neurologist. Totally routine - no problems - just checking in. I asked about getting an MRI since I'll be losing my incredibly good health insurance soon. He agreed and wrote the script. We talked about how stable I've been for so long, We even talked about the idea of discontinuing DMTs. I am, after all, a "woman of a certain age" and there is a school of thought that if you've been stable for a long time (as I have been), right around 60-65, you could discontinue your DMTs. Off I went to get the MRI. Totally routine. Nothing to worry about. I've done 20+ of these things. No. Big. Deal.  Then came the voicemail from my doctor at 7 pm. He wanted me to come in the next day to talk about a "plan of action." WHAT!?!?  Why do we need a plan of action? What's wrong with the one we've been using - it's been working so beautifully. SUBCLINICAL PROGRESSION. That means that although I've had no symptoms - that MS bastard has been working behind the scenes. UGH. I have a new lesion and 2 of my old lesions have grown significantly - all since my last MRI last year. We're going to switch medications and try and get on top of this thing. Here's hoping. 🤞🏻  So - what have YOU been up to??  Let's get to the top 6 topics in MS this week, shall we??1.  COVID is on the upswing again. UGH. **Do you have an FUMS mask??  Are you up-to-date on your vaccinations?  Speaking of which - here is a new study about vaccines and MS that finds getting vaccinated wasn't tied to an uptick in multiple sclerosis (MS) flare-ups in a large national study from France.  Vaccines Not Linked to MS Flare-Ups2.  Could an FDA approved MS drug already on the market be a new Alzheimer's therapy??  Here's hoping 🤞🏻  “We’ve uncovered that a medication already on the market, ponesimod (brand name ‘Ponvory’), can reduce one of the hallmarks of this disease: neuroinflammation.”  Multiple Sclerosis Drug Shows Promise as New Alzheimer’s Therapy3.  Researchers from Brigham and Women’s Hospital have developed a probiotic aimed at suppressing autoimmune reactions in the brain. These autoimmune responses, where the immune system targets cells in the central nervous system, are at the core of several diseases, including multiple sclerosis.  Groundbreaking Probiotic Therapy Could Revolutionize Autoimmune Treatment4.  This test is an exciting advancement in terms of it assessing levels of 18 proteins and it uses AI to predict new disease activity risk. I am Patient #1 in a Phase 2 clinical trial of UVB Light Therapy and this is the blood test required for the study. HOWEVER - I was rated a Level 3 - low disease activity -  on the Octave Bio scale. As I shared, I have a new lesion and 2 old ones that have grown. That's not a low level of MS activity. I have contacted Octave and am sharing my MRI and other bloodwork records with them in an effort to understand this discrepancy.  Stay tuned.  Meantime - have a read about it - it's pretty interesting: Octave’s blood test accurately captures MS disease activity5.  OK - when I found this next article, I found it intriguing. However - it was only 7 people - and it includes PT so - from my perspective, it might just be the PT that promoted the improvement in strength and range of motion. Be careful when you read these things. Look for number of participants, who sponsored the study, who stands to benefit (profit), etc.  A course of neuromuscular electrical stimulation using Neufit‘s neuro-bio-electric stimulator — a device dubbed Neubie — alongside physical therapy (PT) led to improvements in strength and range of motion for seven people with multiple sclerosis (MS), according to a case series.  Neubie electrical stimulation device found to help in progressive MS6.  I don't think I mentioned where I moved: I moved to the beach!!! As such - I'm trying to get out and walk on the beach whenever possible. You know how horribly hot it's been this summer??  My saving grace has been using my Thermapparel UnderArmor cooling vest.  It's very lightweight, fits tight to my body (no one can tell I have it on), and keeps me cool right to my core for up to 3 hours!! This heat isn't over yet - AND - you can wear it all year long for situations where you might overheat: working out, gardening, raking leaves, decorating the tree, dressing up as Santa - whatever! Get yours right here: Too Cool for SchoolWell - that's all folks. I sincerely hope this little newsletter o'mine has helped you somehow.  If so - could you please do me the honor of sharing it with others you think may benefit from it as well??  Just forward it to them or send them to www.FUMSnow.com/6pack to sign up for it themselves!  Thanks for the help spreading the word!!Warmly (very literally 🥵) -- Kathy#FUMSP.S. I am in constant pursuit of bettering my FUMS offerings. If you have any suggestions for this newsletter, the podcast, or any other FUMS product - I'd so appreciate you hitting reply to this email and letting me know. Thanks in advance.  

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