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I have been struggling with the same thing, after years of being what some people might think of as a bit of a workaholic, once I got to “Now I can’t work, what do I do” (After I got done struggling with “Now I can’t work, who am I), this is what I came up with:

 


Exercise: Everything I have read thus far, highly encourages persons with MS to get as much exercise as they can get. All of the stories I read about MS that make you think “I would like to experience what that person is experiencing” start out with “I got MS, and I thought my life was over, but then I got very serious about sleep, diet, and exercise”) This gentlemen just posted a very nice one on this very subreddit: https://www.reddit.com/r/MultipleSclerosis/comments/ca5lem/something_uplifting_after_two_and_a_half_years_i/
One of the challenges for me was as someone who used to be fairly athletic years ago, for me exercise was a way to enjoy the wonders the human body was capable of, and going for a short, shuffling walk at the end of which I was exhausted felt… I don’t know, not great. At that point I went to a talk on MS and one of the doctors that was speaking talked about the importance of exercise, and relayed a series of stories about exercise and MS. One of them was about a gentlemen who had lost the use of everything but his left arm. His words were something like “That arm is one of the most important things going on in my practice, it’s the arm he uses to order food, to facetime with his children…”, and then he went on to describe the stretching and exercise he would do to try to preserve as much function as possible.
Some days of course are better than others, on the good ones I try to get in as much exercise as possible. On the bad ones, well I can do less, but I try to do what I can. One thing that has helped for me is thinking of the MS like a foe. It wants to destroy you, take things away, crippled you (I realize this is silly anthropomorphizing, but I feel like it helps me maintain a good state of mind). On the days I feel good, it makes it easier to go out and do what exercise I can, it feels like I am gaining on my foe. On my bad days, I think “Alright, you got me today, but let’s see how I feel tomorrow, perhaps the MS leaves a hole and I can slip through”. Somehow approaching it this way makes me feel slippery and determined, rather than crippled.

 



Reading: When I was younger I read a great deal, but it fell off as my career picked up. I got to a point where I would only read a handful of books a year. Now with more time, I have been spending more time with a book.
I recently finished Sapiens, and very much enjoyed it: https://www.amazon.com/Sapiens-Humankind-Yuval-Noah-Harari/dp/0062316095
I am now working my way through the histories of Herodotus (and am finding them fascinating): https://www.amazon.com/Landmark-Herodotus-Histories-Robert-Strassler/dp/1400031141/ref=sr_1_1?keywords=landmark+histories&qid=1562946514&s=books&sr=1-1

 


Watching: The wife and I watch some TV together, and we have both been on history kick. We have been watching some of the great courses, and really enjoying the experience. Some of our favorites:
https://www.thegreatcoursesplus.com/show/the_rise_of_rome?tn=Also+By+This+Professor_0_3 Everything I have seen by Greg Aldrete is good, he seems to conduct creditable scholarship (For example, he calls out when historians disagree on some topic, shares the views of both camps, and THEN shares his thoughts), and he tells a fantastic story.
https://www.thegreatcoursesplus.com/show/living_history_experiencing_great_events_of_the_ancient_and_medieval_worlds?tn=The+Great+Courses+Plus+Online+History+Courses+_0_70 Robert Garland takes moments out of history and works to make them come alive. I would argue that (at least for me) he succeeds spectacularly in this series.
https://www.thegreatcoursesplus.com/food-a-cultural-culinary-history The history of food, and history told with an eye to how everything has been shaped by food.
In addition to these, there are countless other good ones. As someone who purchased some great courses in the past (at what were some fairly exorbitant prices even on their sales), I very much like their new subscription model where you pay a fee each month and have access to everything. You can try out a lecture and see if you enjoy the lecturer style.

 


Gaming: Weirdly, being sick has destroyed a lot of the fun of gaming for me. Before I got sick, gaming was a thing I enjoyed “After I did my work”. Now that I don’t have work to be done with, someone how I don’t feel like I have “Earned the right to game”. Not saying this makes sense, necessary, but of course we feel how we feel. I have continued to play EVE Online (which I played before I got sick), albeit at a much lazier pace. I played through much of the latest Zelda with my 6 year old, which was fun, and recently played through FAR: Lone Sails which is a quiet, atmospheric puzzle solving game that involves piloting a vehicle through a post apocalyptic wasteland. Despite that description, I feel like the game is more soothing then it is anything else. It’s beautiful made, it was an enjoyable experience.

 


In addition to this jazz, I have of course been spending time with my wife and children. After my last flare I was spending a lot (almost all) of my time in the house, and more recently I have been making plans to see friends. Because my energy does not last so long, I have been trying to do lunches, perhaps meet a friend on their lunch break at work. The lack of outside the family adult contact once I stopped working has been weighing on me, and having a chat with an old friend has been a real boost.

I admire your mom for her desire to stay active. I was also diagnosed the week before my 50th. A couple of key things of importance is hydration and staying cool. According to my neuro, hydrate, hydrate, hydrate. I struggle with getting the water down but find it easier to add lemon and hot water in winter just because I like warm drinks in winter. Also in the summer I try to stay as cool as possible and have a scarf which I put in the freezer and wrap around my neck to stay cool. There are many cooling vests available which I haven't yet tried and may be worth looking into as it is important to not overheat.
As for exercises u/LDP78 trained for a long cycling ride by starting slow and building up to it. Very inspiring. There are others who do run long races and marathons as my neuro went to cheer them on at the finish line.
A website to check out is the MS Fitness Challenge run by David Lyons and his wife. David was and still is a fitness professional and bodybuilder diagnosed with MS. He has a book coming out February 1, 2017 Everyday Health and Fitness with MS. I have pre-ordered mine and am so excited for it. https://www.amazon.com/Everyday-Health-Fitness-Multiple-Sclerosis/dp/1592337414/ref=asap_bc?ie=UTF8
As for other types of exercises she may enjoy swimming and pilates. Here is a great video for stretching, pilates for MS I just found https://multiplesclerosisnewstoday.com/2017/01/10/pilates-exercises-for-multiple-sclerosis/
I also like Jack Osbourne You Don't Know Jack About MS and Lisa Cohen Rockstar Women with MS.
I'm sure your Mom really appreciates your support. My boys are also a huge support system. I have told them I want/need to pick up my workouts and goals and I know they and my husband are my huge cheering squad. You are doing a great job educating yourself about MS to support your Mom. Keep up the great work!

> I have had MS since Christmas of 2014.

Wow. Merry Christmas! :)

You're about the same age I was when I was diagnosed, with the big difference that I have testicles and you don't.

> At my last appointment I made it a point to point out I can't raise my leg past my other legs ankle.

My first attack started in my left hand and eyes with some mental issues.

Of course, every case is different. My eyes and mental issues cleared up pretty quickly. But my left hand was essentially useless -- mainly cosmetic :) -- for about a decade. Then it started to recover and today I can snap my fingers and have some pretty substantial feeling in it (but it's still numb, clumsy and tingly).

In short, things do change, especially at your age. Let's hope it does with your legs. Research says to exercise/stretch/move them and that makes a slight positive difference in disability.

> but I'm diabetic and

I don't know anything about you and diabetes, other than a lot of overweight people have it.

Since myelin is fatty tissue in the brain, and since I tried alternative treatments for MS after neuros started suggesting "experimental chemo" (no one wants to hear chemo coming from a doctor's mouth, and it's even worse with the word experimental in front of it!), I deliberately tried to gain weight and so I put on fat. (It didn't work for MS but I did have to have my gall bladder removed.:)

After the fat thing didn't work I also tried some MS diets. That did ID the fact that gluten does impact my health/how I feel.

But the godsend was a semi-paleo diet, which I still do. That allowed me to shed weight and to keep it off without even trying. Eating tons of greens improved my vision from slightly worse than 20/20 to better than 20/20. Sadly, it wasn't a cure-all for MS, but I liked the other benefits so much that I stick to a semi-paleo diet. (The gluten thing is definitely a keeper for me and I think there's truth in the "Grain Brain" idea.)

> So FINALLY he took me seriously...

Wow! You had the same neuro that I did! I thought she would've retired by now but she must've gone trans. :)

Please re-post a summary about the steroid jell if/after you do it. I did bee venom therapy for a while and it did give me small increases in my energy level (bee venom also contains steroids).

Edit: Typos, clarity.

What I've found is that changes in diet impacted (in a good way!) my energy levels and gave positive changes in some other MS symptoms. I don't buy the line that diet can "cure" MS, but I'll happily accept positive changes. :)

> I've been trying to lose weight

For me I have to wrap my head around things before I can make the changes a lifestyle change.

Key factors for me was reading the Grain Brain book and also reading about anti-inflammatory diets.

Discovering in myself that I am sensitive to wheat/gluten was huge (I can eat wheat with no stomach issues, but it definitely factors into "cog fog" for me) -- that convinced me to be gluten-free.

Reading about the fact that for centuries we've fattened animals for slaughter by feeding them grain, meant it was a short leap for me to just avoid grains. I'm not religious about that, but if given the preference I avoid any grain.

It's the same thing for heavily processed foods. If it doesn't "rot" and comes in a package that is processed to sit on a shelf for months and months, I don't want to eat that.

FWIW, this mainstream MS-specializing neurologist/doctor has a couple of videos on diet (examples: 1, 2). I love that guy's videos and often will play them as "background noise" while doing other things around the house. I've heard those same sentiments about diet echoed by other neurologists and doctors.

> Sometimes I mix them with baby spinach to get a different green in,

Oh yes, that's great. I routinely throw a bunch of "weird" veggies or greens into my salad. With that Subway-type cutting/chopping bowl, it's easy to cut them up.

I saw your reply to u/vedsten. Your friends should be understanding if you have to sit out for a little bit because of the heat. That's what friends are for. I went to see The NBHD a couple summers back and my friends and I got SUPER close to the stage. However, I couldn't take the heat like I used to. I told them I'd go stand in the back and meet them later. They came and stood with me, sat with me when I needed to sit... it was still a fun night. Your friends will probably surprise you, especially if you talk to them about your fears beforehand.

You can still do the things you love, you just may have to adjust a little bit. Will you still dance all night? Maybe you still can. Maybe not. Take care of yourself first. Never give up something you love for fear of what others are going to think.

Hydrate. Also, look into getting some cooling scarves. You could wear it while you're out and that might help keep you cooler while you're enjoying the show! Something like this one: http://www.amazon.com/Ergodyne-Chill-Its%C2%AE-6602-Evaporative-Cooling/dp/B001B5I57I/ref=sr_1_1?ie=UTF8&qid=1464378214&sr=8-1&keywords=cooling+neck+scarf

I like this a lot:

Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery

and they have a pretty cool website: https://overcomingms.org/

I also like Terry Wahls book:

The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles

Her website: http://terrywahls.com/


Aside from that, I've done tons of research on the drugs and methods of diagnosis. Not all of it is pretty. Some of the harder to find stuff is pretty eye opening.

Basically MS is a huge pile of different symptoms that they just group together under the name. They don't really know how or why it happens, or why the drugs they give (sometimes) help.

There has been a large push lately to diagnose MS earlier. 10 years ago they'd not have told me I have MS. In one way this is good for patients, they can get the help they need earlier.
On the other hand, the docs might miss something else that they just group under the big umbrella they call "MS".

For example, Lyme disease might look like MS in some people.

As for drugs, the first ones they put everyone on, Interferon (rebif, avonex), and Copaxone have a horrible success rate. Something like 30%. That combined with all the side effects really makes them iffy. The doctor won't tell you that, and it defo is not advertised on the more mainstream (drug industry funded) MS "help" sites.

Hope that gives you some ideas where to start. Don't believe everything you read right off. Defo do your research on the drugs yourself! And watch out for the trap on most ms help sites. There's a cult of drug worship that can be pretty toxic.

I say drugs can be useful. I wouldn't tell anyone to stop taking them, but they can only help an otherwise healthy lifestyle.

Take care.

This cooling towel was a life saver this summer. I haven't been able to afford a cooling vest yet, but I'm amazed at how effective this thing is. Just soak it in cool water and wrap it around your neck. I was able to get a lot more done this summer because of it.

By the way, I absolutely love this thread. Such a great idea for a post, and the comments have been very helpful.

Hey! 28M recently diagnosed RRMS. I feel exactly where you are at in life, and a big thing that keeps me moving through this is Jack Osborne’s motto. “Adapt and overcome”

Life is a beautiful thing and having MS doesn’t mean anything different. We are normal people with just a little bit of bad luck and you WILL lead a normal life. Just always ask for help when you need it!

I had a lot of career and life realizations similar to you as I began my path toward treatment after diagnosis. I have a feeling you will also benefit as greatly as I did from the book below.

https://www.amazon.com/Defining-Decade-Your-Twenties-Matter/dp/0446561754

Be positive. Stay hopeful. Travel. Eat. Love. Use your diagnosis date as your lotto numbers. Put yourself outside of your comfort zone and SWIM. People are a lot stronger than they know when they face something like MS.

>We are both worried and are trying to make the best choice.

What does 'the best choice' mean to you? Because according to studies, in terms of MS, the best choice for disease progression IS to go on drugs. However, if you are married to the idea of not going on medication, I picked up the book Overcoming Multiple Sclerosis. The book is good because it goes into depth about all the steps in the process, but there is also a website that has all the basics.

Edit: I also wanted to add that she can go on a different med from what her neuro suggests. I'm also concerned about side effects and if my neuro had suggested Ocrevus right off the bat, I probably would have pooped my pants. But Copaxone is one of the mildest out of the MS drugs.

Did she have any side effects while taking Copaxone, or was she just afraid of the possibility of side effects? Was there a particular reason that the neuro suggested Ocrevus (e.g.: 'I just got your MRI results, and you've had such an explosion of lesions since your last one it's a miracle you can still walk')?

I use it! I can speak to what is has really done, but my brother who also has MS takes the same sups and cooks with the actual mushrooms and says his flares are less frequent recently, so who knows. This is the one we both take:

Host Defense - Lion's Mane Mushroom Capsules, Natural Support for Mental Clarity, Focus, Memory, Cerebral and Nervous System Health, Non-GMO, Vegan, Organic, 60 Count https://www.amazon.com/dp/B002WJ2ALO/ref=cm_sw_r_cp_apa_i_d.CrDbJGTKZPQ

I've been to the islands a fewntimes since my diagnosis and didn't need one. I would rate my heat intolerance as moderate. Usually there are good breezes so it is often just the intensity if the sun. I was in the Bahamas in June once and the heat really varied. I bring a [cooling towel] (http://www.amazon.com/gp/aw/d/B001B5I57I/ref=mp_s_a_1_2?qid=1463079471&sr=8-2&pi=AC_SX236_SY340_FMwebp_QL65) with me when traveling to Florida now. I feel like it works pretty well.

So as long as we're not looking for a mobile....

You'll need to put together a few things. It's important to say that this is a level of building that I would feel comfortable doing with my 10 year old nephew, so you should be up to it.

You'll need a small water pump. I use this, pump

Some surgical tubing, 10 feet or so.

An ice chest

A couple towels

Some sewing needles and thread.

A small DC power supply.

And BLOCK ice. Not ice cubes, they melt to fast.

Lay a towel out and start sewing surgical tubing to it. You want to make "S" shapes but sew it down so that it doesn't crimp. You'll also want both ends of the tubing to exit the towel on the same corner.

Plug the tubing onto the water pump, and plug it in to the dc power supply. Careful that the cord doesn't get wet, 12 volts won't kill you, but it's annoying.

You now have a Cold blanket. You can stitch another layer of towel on, and I recommend it, to finish it off.

Put it between your sheets and enjoy a cold bed.

I like these! Much cheaper! They basically sit on your jugular veins and cool the blood to your head which cools you.

https://www.amazon.com/JellyBeadZ-Cooling-Scarf-Bandana-Black/dp/B004XX4X9E

Swipe file I've been compiling on cognitive decline over the last couple years:

• Dr. Rhonda Patrick + sauna use: https://www.youtube.com/watch?v=jL7vVG_CFWA
  
• Dr. Terry Wahl’s book: https://www.amazon.ca/Wahls-Protocol-Radical-Autoimmune-Conditions/dp/1583335544/
  
• Ben Greenfield Fitness podcast addressing protocol for dementia or Alzheimers: https://bengreenfieldfitness.com/2015/12/episode-340-full-transcript/ (see the 45min mark of the transcript for a listener question about protocol’s for Alzheimers)
  
• Dr. Trent Austin - Natural Treatments for Symptoms of Multiple Sclerosis: https://www.youtube.com/watch?v=-HTn8Xr3TGk
  
• Olive oil + Alzherimer's: https://www.sciencedaily.com/releases/2017/06/170621103123.htm
  
• Cognitive Decline Protocols: https://www.reddit.com/r/Nootropics/wiki/cognitivedeclineprotocols

From what I can tell they are 1g.

This is the one I’m taking. Ive tried all sorts of things for brain fog and fatigue and even my family says they notice me having more energy. Not sure if it’s placebo lol but even if it is, I’m okay with the results.

https://www.amazon.com/dp/B002WJ2ALO/ref=cm_sw_r_cp_api_i_lxZ0CbQAFE3GN

You have a lot of good advice here. I was diagnosed last December at 39 and had a lot of questions too. There are a lot of thick books out there that I wasted money and time on but as stupid as it wounds, I found MS For Dummies to be easy to read and really informative. It gave me a good base for future reading.

https://www.amazon.com/Multiple-Sclerosis-Dummies-Rosalind-Kalb/dp/1118175875

https://smile.amazon.com/Ergodyne-Chill-Its-6602-Evaporative-Cooling/dp/B001B5I57I/ref=sr_1_8?s=sporting-goods&ie=UTF8&qid=1496598431&sr=1-8&keywords=cooling+towel

Something like that or,

https://smile.amazon.com/FlexiFreeze-Ice-Vest-Velcro-Closure/dp/B001P30358/ref=sr_1_4?s=sporting-goods&ie=UTF8&qid=1496598521&sr=1-4&keywords=cooling+vest

A vest with gel packs inside that can stay colder longer.

So now I'm googling because I've always been curious about this and I found a couple books on the subject, though they don't deal with MS specifically:

https://www.amazon.com/Brains-Way-Healing-Discoveries-Neuroplasticity/dp/014312837X/ref=pd_sim_14_2?_encoding=UTF8&pd_rd_i=014312837X&pd_rd_r=7Y8WFEFKSJZ804H9V4JF&pd_rd_w=R6eC4&pd_rd_wg=LDtma&psc=1&refRID=7Y8WFEFKSJZ804H9V4JF

https://www.amazon.com/Brain-That-Changes-Itself-Frontiers/dp/0143113100/ref=pd_sim_14_1?_encoding=UTF8&pd_rd_i=0143113100&pd_rd_r=ZKM6NP8A26MXV4D7BVBR&pd_rd_w=Ra4iU&pd_rd_wg=6KI75&psc=1&refRID=ZKM6NP8A26MXV4D7BVBR

Try these!
http://www.amazon.com/JellyBeadZ-Cooling-Scarf-Bandana-Black/dp/B004XX4X9E
They have little gel beads that keep it cool.

I found this pump that I am considering ordering and giving a shot.

After speaking with my mother about this idea, she's going to get together with my father and see what they can come up with as far as a vest/shirt.

Lol no i tend to type really fast and make mistakes. "Swank" is correct. :)

This is the book i ordered for reference:
http://www.amazon.com/Multiple-Sclerosis-Diet-Book/dp/0385232799/ref=sr_1_1?ie=UTF8&qid=1421099111&sr=8-1&keywords=swank+diet

Swank did some work in the 70s on this angle, but little or no work since then has been done.

To me, there is a link between diet and the disease.

The problem is that there are just so many variables, and most people's diets/lifestyles are geared to eating the corporate-produced food that we're all too familiar with.

FWIW, there are other popular MS diets (one example) that you might be interested in.

Regarding Wahls' approach, I have two big reservations:

1. I wonder how much of her recommendations are related to her vegetarian/vegan (whatever) past and today's trends about "raw food."
   
2. While I'm not sure what's "normal," there seems to be a stronger-than-expected twist to making money from Wahls' diet.
   
   Edit: Typos.

Just your definition of "(was) stiletto wearing dance party" reminds me of a book I read about somebody else's MS diagnosis. "Awkward Bitch" by Marlo Donago Parmelee. It was reassuring reading about somebody else's diagnosing difficulties and reassuring at the same time.
http://www.amazon.com/Awkward-Bitch-My-Life-MS/dp/1438990480

I purchased this planner and it’s helped me a lot with my day to day stuff and to track things. ❤️

MS is curable and completely reversible. Look up the "Wahl's Protocol". Here's the book. Check out the reviews:

https://www.amazon.com/Wahls-Protocol-Autoimmune-Conditions-Principles/dp/1583335544/ref=sr_1_1?ie=UTF8&qid=1519076998&sr=8-1&keywords=the+wahl%27s+protocol

( paging u/Elzena_ )

I was diagnosed RRMS in Feb 2002. I was re-diagnosed in Feb 2017 with Secondary Progressive. When you said this:

> how am I supposed to accept this new reality? I suppose I just sort of have to? Not like I have a choice in the matter... I guess it takes time.

It just hit me, again, hard. I am into this thing for a LONG time now, and I am still adjusting. I am still accepting the new normal.

I wish I could give you a better answer. I recently finished the Subtle Art of not Giving a Fuck

It's the usual blend of BS pop psych and what not, but one thing really really hit me: You cannot accept responsibility for what happens. You can only take responsibility for how you react to it.

I have good days. I have bad days.

I have a ton of spinal lesions, and most of my MS stuff is below the waist. When I was DXed with the secondary progressive, the doctor said he didn't really understand how I still walked without aid or a wheel chair.

Anyway, for years I had horrid shitting problems. Explosive, violent, painful and horrific shits. Like something HR Geiger would draw. Perhaps Jackson Pollack if instead of Oils he used poop.

This week, I had to have a colonoscopy. Everyone talks about how awful the prep is. How disgusting, how painful and how gross.

Well, let me tell you--- Compared to my MS Shits, this was nothing. I could do that every day--- fuck, twice a day, rather than have one of my MS Shit 'Splosions

It made me realize, again, that we deal with our MS, our issues and our symptoms as best we can. That what we have does become a new normal.

That something we deal with everyday is both a new normal--- and an old horrible.

But it makes us so strong.

I am an Atheist but I grew up Old-School Jewish.

Yet, I love this good old line, I think it may be from the Jesuits.

No one is given a cross to heavy for them to carry.

Good luck, I hope my ramblings weren't too, well, rambly--- and feel free to PM me as the journey of MS takes you down its weird and wild path.