Best products from r/MultipleSclerosis

We found 38 comments on r/MultipleSclerosis discussing the most recommended products. We ran sentiment analysis on each of these comments to determine how redditors feel about different products. We found 129 products and ranked them based on the amount of positive reactions they received. Here are the top 20.

Top comments mentioning products on r/MultipleSclerosis:

u/LaskerEmanuel · 5 pointsr/MultipleSclerosis

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.

u/rocks_trees_n_water · 2 pointsr/MultipleSclerosis

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!

u/SoManyQswithAs · 3 pointsr/MultipleSclerosis

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

u/Terminal-Psychosis · 1 pointr/MultipleSclerosis

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.


u/Red9inch · 1 pointr/MultipleSclerosis

I recently purchased this cooling shirt from amazon for 70 bucks. It's a standard evaporative shirt, so figure your going to be soggy. Also it requires some airflow to be even sort of effective. That being said, I did a 6 hour archery tournament, hiking through the hills the whole time, and did pretty well. Take a zip lock bag, drop the shirt in with and pour in some cold water. Squish it around a little to get the shirt to absorb everything and your good to go.

This shirt is pretty tight, but really doesn't restrict my movement at all. I've played Disc Golf (different I know, but still a lot of body motion) and archery in it and am happy with how it work.

Probably only going to be effective in a dry environment, so if you live someplace humid, your results may vary.

I also use one of the neck wraps, and am pleased with how long it stays cool, but honestly it doesn't help as much as I would like it to.

u/engineeringtool · 2 pointsr/MultipleSclerosis

Good thing I actually read all of your text before blurting out "What drug are you on?!" To answer your question, yes, yes, and yes. I will say right now that the dry eyes issue is something I have not figured out as of yet. I, like you, just use standard drops for dryness when need.

Let's move onto the cold feeling. What does it feel like to you? Left your mittens off when you go outside cold or all the blood has retreated from that limb cold? As u/rujoshin said, it could be partly a circulation problem. My nurse sister claims people with ms can actually develop poor circulation. I don't know the mechanism but it is sure what it feels like.

I used to be one of those people that was always hot, like t-shirt and shorts all year, even when snow is falling. Some of it could be body change as you get older but after starting gilenya (2+ yrs ago) I really started to notice that I had a really hard time with controlling body temp. Not only do my feet get cold, they can also get super hot and it's like my body doesn't know how to redistribute heat (again pointing to poor circulation).

Is it just in you feet and hand? You should try to take note if it starts to creep up your limbs. It was just my feet and now it feels like everything below my knee has frozen solid. Does is matter how many layers you put on your feet? Gotta have warm blood there before layers start to do anything. I could have 2 pairs of socks, slippers, and a blanket wrapped around my feet, didn't matter, still cold.

Some things I have learn to cope with the painful cold radiating up from my feet. First and foremost! Sunbeam Foot warming pad saves my life when trying to sleep. I don't know about you but it got worse as time went on when trying to go to bed. As soon as I got horizontal, I could feel the heat draining out of my feet. I use it to preheat (30 mins before bed) the foot of the bed and turn it off before I go to sleep. This is the space heater I use at work to blow warm air on my legs. And finally, something I got for christmas and use from time to time, heated insoles. They are kinda bulky but fit in my slippers nicely when I am just around home.

u/ShiftedClock · 2 pointsr/MultipleSclerosis

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.

u/LayBayHaySay · 2 pointsr/MultipleSclerosis

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.

u/otterberg1 · 1 pointr/MultipleSclerosis

I've been experimenting with nootropics for years, trying to deal with my major depressive disorder. My mom has MS, and while I have no delusions of curing her, whenever I find something that I think might help her power through the day I'll send her some. Most of them don't help at all, but the two things she has responded positively to are mushrooms and this weird resin from the Himalayas called shilajit.

Nice thing is, both of these are pretty cheap and natural.

Shilajit- https://www.amazon.com/gp/product/B0753NVC31/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

Mushroom blend- https://www.amazon.com/gp/product/B07NBR6FY4/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

u/NotAFishYouCanCatch · 1 pointr/MultipleSclerosis

>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')?

u/Slick_51 · 2 pointsr/MultipleSclerosis

Uggh! I hate socks, shoes and the blankets on my toes when I sleep. I know this doesn't help specifically, in fact it makes your feet colder at night, but it keeps the blanks off my toes when I sleep on my back. I agree a heated blanket is helpful, I keep mine under my feet inside my little blanket tent. Hope this is somehow helpful. https://www.amazon.com/Blanket-Adjustable-Blankets-Accessories-Recovery/dp/B07R7P8JDD/ref=sr_1_9?keywords=blanket+holder+under+mattress&qid=1573841612&sr=8-9

u/AmbivalentCat · 1 pointr/MultipleSclerosis

I started off with Oasis eyelid wipes (non-tea tree), which I got from my eye doctor's office, but when I ran out of those, I tried the tea tree kind which I like a lot better.

https://www.amazon.com/Oasis-LASH-Tree-Eyelid-Cleansing/dp/B077YNRSB2/

Cheaper versions like OcuSoft also work, but I found OcuSoft to be a bit too rough and not quite as moisturizing - haven't tried other brands. I cut the Oasis ones in halves to last longer (I use one side of the half for one eye and the other side for the other eye).

As for eyeliner, I haven't tried wearing any with the tea tree ones, but I wore it just fine with the regular version, so I don't see how it would be any different. I do use all waterproof eye makeup though since I wear contacts.

u/ajstarks87 · 3 pointsr/MultipleSclerosis

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

u/rockstang · 3 pointsr/MultipleSclerosis

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.

u/biologic6 · 1 pointr/MultipleSclerosis

I have two of these https://www.amazon.ca/OXO-Good-Grips-Strong-Suction/dp/B00940DVT4 they are great and have helped me more times than I would have liked.

u/msisnotme · 3 pointsr/MultipleSclerosis

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

u/realmushrooms · 1 pointr/MultipleSclerosis

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

u/temp8588 · 1 pointr/MultipleSclerosis

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

u/Senator_Felch · 2 pointsr/MultipleSclerosis

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

u/dragsys · 1 pointr/MultipleSclerosis

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.