The FUMS 6-Pack

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Hey there,

Anybody else counting down the days until it’s warm again and the sun is out longer? This is the time of year that depression and anxiety can creep in. Those are the 2 most common comorbidities with MS so - we need to be on guard 🤺. As much as I hate to admit it - movement helps (notice I didn’t say exercise??) If I move more, everything is better. I sleep better, I have better mental clarity, less fatigue, and I feel better. That sort of pisses me off, honestly. I’d FAR prefer to curl up with a good book or watch a movie - but I’ve learned over time - movement is the better choice. It’s tough this time of year. It’s cold as hell out there 🥶 and we’re actually getting some snow this year! ❄️☃️ So - I joined the very inexpensive local Rec Center for $115 per year - and I use the treadmill, the bikes, the weights, and the pool - and damn it - I feel better. Remember my mantra: if we quit moving - we quit moving. Keep moving. Full stop. 🛑

Let's see what's up in the world of MS, shall we??

1. In last week’s 6-Pack I asked you marvelous FUMS’ers to share what works for your spasticity in these cold 🥶 months - and, as always - you delivered:

• Mike Strasheim suggested Rocksauce Fire Pain Relief Cream and said it does the trick for him.

• Darren Schuster suggests trying oxygen therapy in a hyperbaric chamber

• Margaret Mahoney shared that like me, she takes Baclofen and uses a heating pad. Additionally, she’s started doing Pilates - 3 times a week 😳 - and says she’s really noticing a difference.

2. I have always been wigged out by that damned Gadolinium they use for contrast in MRIs. There have been reports of Gadolinium poisoning ☠️ and I had a tech go all the way through my vein - out the other side - and deposit the Gadolinium under my skin. My MS was pissed! 😡 I was in bed for a week. So - you can imagine my interest in this next article: Gadoquatrane, a contrast agent Bayer is developing for use in MRI scans, is able to detect regions of damage and other disease-related features while using 60% less gadolinium — a chemical element used to enhance an MRI — compared with existing gadolinium-based contrast agents. Bayer’s MRI contrast agent effective with 60% less gadolinium

3. REMYELINATION. Got your attention, right? 😉 The U.K.’s Medicines and Healthcare products Regulatory Agency (MHRA) has cleared Pheno Therapeutics to initiate a first-in-human Phase 1 clinical trial to test its oral candidate PTD802 in healthy volunteers. The therapy is a selective small molecule antagonist, or inhibitor, of the GPR17 receptor and is designed to restore the damaged and lost myelin — a process known as remyelination — in people with MS and potentially other demyelinating conditions. First clinical trial of remyelination therapy PTD802 cleared in the UK

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4. Research Participation Opportunity: Researchers at the Exercise Neuroscience Research Laboratory at the University of Illinois Chicago are inviting you to participate in a remote survey study examining the factors that impact physical activity in persons with MS who experience elevated anxiety symptoms. Online Survey: Physical Activity and Anxiety

5. I am on Briumvi. I have been on Betaserone, Tecfidera, Vumerity and now Briumvi. I like that it’s just once every 5 ½ months, but it is an IV infusion meaning I have to go to the Infusion Center (mine is in a hospital) and go through the stick (or more commonly, multiple sticks), wait for the liquid gold to drippity drip drip drip into my silly rolly-polly veins and then have a huge bruise for days. But now - the manufacturer of Briumvi TG Therapeutics is working to develop a subcutaneous, or under-the-skin, version of Briumvi (ublituximab-xiiy). Bring. It. On. 🥳 TG developing under-the-skin version of MS therapy Briumvi

6. Managing cholesterol levels may help reduce cognitive changes in MS. Well - talk about a twofer: managing cholesterol levels can benefit cardiac health too. Winner, winner, chicken dinner. And by that I mean, you should eat chicken rather than steak - as a first step to managing that cholesterol!! Is There a Link Between High Cholesterol and MS Brain Fog?

Kathy's Fun Finds & Recommendations
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It just happened again - and it makes me giggle 🤭: when I do videos wearing my reading glasses - people ALWAYS ask where I got my glasses! ALWAYS. It’s a little maddening - I mean, is anyone listening to what I’m talking about or are they just jonesing for my specs? Ok, ok. Here’s where to go: Peepers

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 -- 

Kathy

Kathy Reagan Young
Founder
FUMS

P.S. What do you think of the poll at the top of the 6-Pack? It’s a new feature I’m trying out. I’ll report back each week on the results from the previous week. Hit reply to this email and let me know your opinion and any questions you think would be interesting for me to ask! Thanks, as always, for your help. 😘

P.S.S. Thanks Mike, Darren and Margaret. Sharing our experiences to help each other is what makes the FUMS community so special.

 

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

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