August 21, 2023

Hey - Do you deal with MS pain? I remember a doctor (or 2) who told me there was no pain with MS. Those are both FORMER doctors o'mine as THAT IS BULLSHIT!!  I'm here to say that not only is MS pain real, but it is complicated - like everything with MS. AND - going on a rant here - knowing where to go for help is also complicated. It doesn't help that I'm in the midst of changing neuros - but even if I weren't - should I see an orthopedist for my foot and shoulder pain? A Rheumatologist for the Ehlers Danlos pain? A spine specialist for my stem-to-stern pain up and down my spine? How about the muscle spasms in my neck and upper back - and, what I assume is a muscle spasm in my left leg that started at the same time a new lesion was found last year that happens to map to that area of my body: would my neurologist handle that? And when/where does a pain management doc come into play? Aaaaaaa. Calgon take me away. Bottom line: if you're experiencing pain with MS - and most of us are - you are not alone. You are not imagining it. You are not delusional. This isn't a psych issue. Yes, Virginia, there is pain with MS. But - I have no answers to the questions above - YET. I'll let you know what I learn. Meantime, you can find me in my neck traction machine, laying on a heating pad, popping Baclofen and Celebrex. 🥴

I have included some "Easter Eggs" 🪺 (extra little surprise treats/links) in this week's edition. See if you can find all 5 of them - then let me know what you think! 😉

What else is going on in MS??  Here you go:1. Do you have a fear of falling because of your MS? It's totally understandable. I have to think about what type of shoes I'm going to wear, what the terrain will be where I'm going, and still, my daughter will say to me "lift your feet mom" to remind me to get those babies UP! I've fallen once - playing pickleball (fractured my pelvis) so - not due to MS, but enough to scare me! The FEAR OF FALLING IS REAL for a lot of us. In response, I give you this: NIH grant supports PhD student’s study into fear of falling with MS2. So - you know when you had that super fun lumbar puncture/spinal tap done? That was to have a good l👀k at your oligodendrocytes (say that 5 times, fast). Now, "a specific epigenetic marker, or a chemical modification in DNA that alters gene activity, may explain why adult oligodendrocyte progenitor cells respond differently to therapies aiming to restore myelin than their neonatal counterparts, a study reports." Always looking to restore that myelin, aren't we?? Do you have the sense that we're getting closer?? That we're gaining on the bastard? I do - and it's pretty damned exciting!! Adult myelin-making cells display unique marker affecting activity3.  One of the most expensive line items in a budget is housing. When you're trying to pay for food, healthcare, and the horribly inflated pharmaceuticals that we all need - you should get a damned break. amiright? Well - just call me you're FUMS Fairy Godmother: Federal, state, and local governments offer programs to help people with disabilities like MS find affordable housing and pay for it. There are also programs to help you modify your current home. Here you go: What to Know About the Multiple Sclerosis Housing Benefit4.  This is a prescription I have been advocating for - and filling myself - for YEARS. 🥃 🍸 🍹 🍷 🍺  Moderate Alcohol Consumption Associated with Slower MS Progression Cheers 🥴5.  I have been THRILLED when I've gotten a good MRI report. Danced, in fact. I'd post "no new lesions" on my socials. It made it hard to understand when I'd have a relapse - when everything appeared "stable." Yet another enigma of MS. You too? Well - you'll enjoy this as much as I did when I first saw it then: 

"Acute clinical events with stable MRI (ACES) in patients with multiple sclerosis (MS) are reportedly associated with significantly higher rates of confirmed disability accrual, relapse-associated worsening, and transition to secondary progressive MS."  😳 UGH. No bueno. Multicenter Study Shows 26 Percent of Multiple Sclerosis Relapses Not Associated with New Lesions on MRI

 6.  I had been taking Baclofen for spasticity for years - off and on. Mostly on. I found it helpful, but it made me REALLY tired so I could only take it at night. I've been experiencing higher-than-normal rates of cog fog lately and thought it might be the Baclofen I was taking at night. So - I quit taking it. And the Celebrex for all the pain. Not only did I not see an improvement in my cog fog, my pain and spasticity went through the roof. It's been ROUGH these last few weeks. I left a pan cooking on the stove for a few hours the other day so I knew Baclofen was not the culprit. I went back to my Baclofen/Celebrex evening cocktail last night. I slept SOLID and today have less pain than I've had in a long time. Thought I'd share my experience along with this article for those of you on Baclofen (and I know that is a LOT of you): Can Baclofen Help With Multiple Sclerosis Spasticity?

MS Condition-Specific Gig OpportunitiesI work with several organizations that provide "gig" opportunities to folks with all kinds of conditions/diseases in my role as founder of Patients Getting Paid. Here are 2 specifically for people with Multiple Sclerosis! If you're interested in the gigs I'm sharing this week - or being considered for any in the future, you must first enroll with the company sharing these opportunities - our friends at Rare Patient Voice. *About time this MS BS finally paid off! 😉 

***You MUST first enroll to qualify for any of the gigs listed below.  Enroll here: RPV & PGP

Here are the gigs for this week:

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 $50

Multiple Sclerosis patients United States120-minute focus group, compensation is $240

Kathy's Fun Finds and Recommendations: 

MS hair - don't care. Oh, and, FU🖕🏻MS! !

Click on the picture and order your FUMS hat TODAY! No shame in your game. Share that FUMS attitude with the world (and cover up that crazy hair)!!*other FUMS merchandise is available too. Check it out: FUMS Shop 

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

Sometimes it helps the stress, just to say F-U-M-SPLEASE share this newsletter 👇🏻

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