I will try and make this as clear and concise as possible...=) I have been eating paleo/primal for about 2 years now. I was diagnosed with relapsing multiple sclerosis about 8 years ago (when I was 18, I'm 26 now).
I've had 3 flare ups so far; the original one, which was numbness on my left side, which cleared up on its own after a month or so. Then I was on interferon drugs for about 5 years which made me feel super crappy and sick and depressed, but no noticeable flare ups during this time. I switched to copaxone, which I eventually had a bad allergic reaction to, so I had to go off of that. I was eating a typical SAD diet at this time.
Once I went off of the copaxone, about 3 years ago, I started researching diet and MS. I started eating "traditional foods" WAPF style, lots of dairy (raw) and grains (wheat and rice and oats etc), eggs, some meat and veggies, lots of fruit. I was off of all meds for a few months, when I had a second flare up, which was numbness in the lower half of my body. This cleared up after a few weeks, about the time I started taking low dose-naltrexone (LDN).
Slowly over the next year or so, I transitioned to a fairly paleo/primal diet--grass fed meat, eggs, some fish, veggies, fruits, coconut, nuts. I occasionally had cheat meals which were mainly either eating out at a restaurant but getting "paleo" type food (some sort of meat and veggie) or ice cream. I was more focused on lower-carb at first, because that is the info that was out there, and for weight-loss for my husband. I tried eliminating nuts, nightshades, raw goats milk cheese, and eggs at certain points but never really felt much of a difference either way because I don't have frequent flare ups or any symptoms to base it on. I supposed I could have gone off of the LDN but that just didn't seem smart since I've only been at this for a couple years. Lately I have been eating more carbs (in the form of fruits--apples, pears, bananas--and yams) and I guess having more "cheat" meals (mainly when I go out to eat, having rice, probably O-6's, and ice cream).
Now, starting a few days ago, I'm having my third flare up. Basically the left side of my face feels cold-ish randomly, and my right hand feels a little clumsy randomly. I also have a sore, scratchy throat and some congestion. I haven't been sick in a LONG time!!! =(
But now I am trying to figure out what I should do...I am probably going to do Robb Wolf's autoimmune protocol, which I believe is just meat, veggies, coconut and a little fruit (right?). But I am not quite sure what caused my flare up...was it the cheat meals? too much fruit? yams? raw goats milk cheese? Also, I live in WI and its been chilly for the past few weeks so I haven't been getting as much vit D. I did supplement last winter with fermented cod liver oil and went tanning every week or so. So maybe lack of vitamin D, too? sigh I just don't know anymore!! What would you all suggest?
asked byIka_1 (123)
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on September 26, 2011
at 06:17 PM
hi ika, i also have RRMS and have been off my copaxone and eating paleo for a year. ive also been asymptomatic for that time.
first off, what caused your flare is your MS. paleo is not a panacea, just a way to control and manage the symptoms of the disease and it sounds like you have been successfully doing that. you still have the disease and you always will until there is a cure. its just acting up and poking you a bit right now. as you know, reducing the frequency, durration and severity of the flares is what reduces the chances of future disability which is ultimately what our goal is, right? you have been doing GREAT so far, so dont get discouraged. just take action however you are able to reduce the systemic inflammation related to the flare and take care of yourself the best you are able.
if i were in your position right now, i would really tighten in the diet and follow the AI protocol. call your neurologist and let them know what is going on. i dont know what the philosophy is at the clinic you go to, but mine are very conservative with steroids which is nice. my old neuro would stick an IV with solu medrol in my arm if i made a peep. im sure you also know that since this flare sounds like its mostly sensory and not motor, thats a good thing in terms of the long term. it sounds like something you can just ride out? how uncomfortable are you? are you having any pain or visual disturbances? when was your last MRI?
and please dont forget to take care of the stress piece. i know you know that stress has a huge impact on your disease, and that having a flare can be so terrifying. the worst part of this disease is the unknown. do everything you can to rest and care for yourself right now. STAY COOL. try some gentle stretching or yoga, sleep as much as you need to. move slowly.
best of luck.
on September 26, 2011
at 05:27 PM
I think you definitely want to eliminate cheats and throw yourself back into a ketogenic state. Up the coconut oil and VitaminD.
Here is a related thread.
on November 21, 2011
at 07:24 PM
There is great advice from everyone on here. Firestorm and AKD are particularly valuable resources. Aside from diet, managing stress and adequate sleep have proven invaluable for me. I am incredibly lucky that my MS has responded so well to a change in diet and stress management. I have the opposite body type from you, I am 5'2" and I am prone to fatness so i can't give you advice there except to tell you that I have had no reactions MS wise to corn or rice but they did cause weight gain. Check out my web site www.nutrisclerosis.com and my FB page www/facebook.com/nutrisclerosis for a place to vent, ask questions, post recipes, work out tips, etc. Its an information clearinghouse for using the autoimmune protocol of the paleo diet to control MS.
on November 21, 2011
at 03:05 PM
Apologies in advance for the length of this post...
MS--particularly RRMS and RPMS -- are a real challenge. I know. I've been dealing with RPMS for 25 years now. It never really goes away. Some things help, but Paleo is not a CURE for MS... it just helps to keep us in optimal shape to deal better with the illness.
For myself, I've gone from being in a mobility device back to a fairly active life. However, my type of MS comes with spasticity -- and I still have episodes that affect my ability to move, see, etc., and which come with substantial pain (for me, it's like my leg tries to crawl back up into my hip, and all the muscles on that side contract like a giant one-sided Charley-horse!)
I'm not going to even try to pretend that I'm "perfect" at this. Like I said in an earlier comment, I think that the whole idea of -having- to be perfect adds a measure of stress to life that can actually aggravate health issues. So I do my best, and make the choices that seem like they're going to be the most beneficial to me over time.
For me, the only regular medical 'treatment' left is steroids when I'm having a flare, and I choose not to use them, because being on steroids for most of my life has caused more than a little damage already to my heart -- I don't want to exacerbate that, since I only have one of 'em. I react badly to most of the treatment medications, and Interferon therapy leaves me feeling like I have the flu for the entire treatment protocol -- so I don't choose to do that so often.
Things that I've found that help ME (because in the end, it's all a big experiment, and what works for me may not work for anyone else):
- High saturated fat diet
- Eating grass-fed raw dairy and grass-fed raw goat dairy (Yes, for me, it improves my general health)
- Minimal amounts of nuts and seeds (typically only -- coconut, macadamia, and cashew, and not much of them)
- Limiting my fruit to berries, bananas, and avocados
- Eating only the yolks of eggs
- As much as possible, sticking to grass-fed or forage fed meat/poultry
- Supplementing with Vitamin D, Vitamin K, and magnesium
- Lifting weights, and doing weight-bearing exercises at least 3 times a week
- belly dancing (helps me with balance and flexibility)
- Only swimming for 'aerobic' exercise during the summer months (the heat causes more flares for me)
- expanding to things that encourage coordination, like racquetball, lacrosse, and touch rugby during the cold months
For the next 3 months, I'm going to try eliminating nightshades, more to manage arthritis in a couple of previously injured joints... but I'll also see if it has any impact on my spasticity and MS.
It's been my experience, after 25 years, that over time, flares cycle up and down. I've been as much as 3 years without a flare, and then had 4 in the same year, regardless of what I was doing in terms of 'management'. The -difference-, for me, shows up in the times when I'm NOT flaring -- how quickly I rebound from a flare, and what I'm able to do when I'm not in the middle of a progression -- as well as what I can do AFTER the disease has done its thing this time 'round. I find that choosing this way of life, as best I am able, provides me with the structure and nourishment to bounce back better than I was when I was on a typical diet. In the end, I'm at the point now (after 2 years on primal/ancestral-herder diet) where I experiment and tweak, but the foundation keeps me moving forward.
Don't beat yourself up over a flare -- do the best you can for yourself, and treat yourself like the precious gift to the Universe that you are -- do the things that make you feel good about your life.
I treat my MS like a gift -- I would never have asked for this, but it was given to me anyway -- and I've learned more about myself and others through the lens of this illness than I might have had the opportunity to do if I'd not had it -- and it's given me an opportunity to truly triumph over adversity -- it's made me a stronger and more compassionate person... maybe there is something in MS and in learning to thrive with it that will be a gift for you, as well.
on September 26, 2011
at 05:41 PM
This is a complicated case because there are a lot of unknown variables.
For example, these "cheat meals" that you wrote about - we don't really know what kind of ingredients went into these meals. Ice cream, "paleo type" restaurant food and etc., can and probably do - contain irritants.
You also mentioned that you eat a lot of fruit. Perhaps the fructose in fruit is causing some trouble due to malabsorption.
I do not know what the exact cause(s) is/are, but I would start by eliminating a lot of these "cheat meals".
I would also suggest checking out Loren Cordain's report on MS: http://thepaleodiet.com/store/ms-products/
You have our support! Don't give up!
on September 26, 2011
at 05:31 PM
With an auto-immune issue you shouldn't be cheating at all, and little fruit (1 serving if that). There is no cure once you are pushed over the ledge, only ease of symptoms. Especially with spinal/brain fluid inflammation. Any time you squirt gas on a fire, there is always a flare up. Paleo is throwing a log on the fire that burns steady. With little to now flare ups, a few craks and pops now and then. Better than the alternative. Stay with the auto-immune protocol.
on May 04, 2013
at 10:01 PM
I was DX with RRMS 12 years ago (7th case in my family so I knew what it was). I have been on a pretty strict paleo diet ever since where I COMPLETELY avoid gluten and dairy products. (On very very rare occaisions I have had a tiny bit of goat cheese - like once every 6 months). I also avoid yeast, sugar, and any additives which are unnatural. I had an ELISA test done which indicated that I should avoid eggs, salmon, oranges and scallops and since I have avoided these things I feel even better. I drink lots of water and try to exercise everyday. I am a busy mom with young kids and work full time. My symptoms have lessened each year from two to three pretty nasty attacks (blindness and paralysis) per year to nothing now. I am pretty much symptom free and feel more energetic than I have in years. It is sometimes hard to eat out, but I have amazing friends and family which have been really accomodating with my diet once I explained it to them. Oh, I should add, I had candida issues too and avoided fruit (except for green apples and some berries) for around three years. Now I can eat fruit again, but I am not going crazy with it like I used to! Anyway, I have found the paleo diet to be very helpful in not only stopping but also reversing my MS symptoms. Also other things have improved like ALL of my eczema which had plagued me for years is gone as well as a continually congested nose. Best of luck and hang in there!
on January 19, 2013
at 12:01 AM
I have been diagnosed MS for 6 years, went off capaxone also due to an alergic reaction. after taking it for 3 years. I started paleo about 2 years ago and was 80/20 until September last year, went on road trip with my 17 year old daughter, finding it hard to get back on wagon. I really want to for the following reasons. About 3 months after I started I noticed that the numbness in my legs and face, that I had been living with for 4 years, was gone. Within days of falling off the wagon legs and face numb again. I'm back to about 50/50. Keep going and good luck.
on October 25, 2012
at 02:19 PM
I started the paleo diet, exercising about 4 mths. ago. I've also been on LDN for about 1.5 yrs. I haven't noticed anything yet--but its gotta be helping--if anything I'll live longer!! I feel good that I'm making a serious effort to get better! SAD and the American food pyramid is a joke! I was on Rebif for about 4 yrs. and I didn't like how it was making me feel (plus a shot every other day is no fun!)Good Luck to all!
on November 21, 2011
at 01:46 PM
There was a similar thread about diet and and MS. To summarize my response, there is a naturopath in NYC who recommends dietary changes for MS. Might be worth contacting her.
I hope you are still seeing a physician. MS is a tough disease, and you should still be seeking the care of a physician regardless of what dietary changes you are making. Perhaps therapeutic options may have evolved, and give you more choices.
Best of luck -prayers with you!!!
on September 27, 2011
at 12:59 AM
You may wish to include foods containing high levels of (or supplements that contain) substances that promote nerve remyelination. These include Vitamin B1, methylfolate, and (especially) the amino acid n-acetylcysteine. Magnesium is also helpful for nerve repair.
If you supplement N-acetylcysteine (NAC) wait an hour and a half or so after eating, then don't eat for an hour or so to maximize absorption.
Hope this helps - kaz
on September 26, 2011
at 10:02 PM
Please keep my updated on this because I'm very interested in symptoms of MS and eating. I would be suprised if I can't find what in particular is causing a re-flare up of symptoms. I have certain questions for you, but would like you to respond to me and tell me what you eat on a daily basis around the time when you weren't feeling so good. Check my profile to find my website where you can contact me underneath diet coaching.
on September 26, 2011
at 07:43 PM
Thank you all for the replies!! Yeah, its so tough to know about the fruit. I thought I was fine eating it (maybe like an apple and a peach and banana at MOST, in a day), and don't have any immediate symptoms when I eat it, but now because of this flare up I am wondering. If I can't eat dairy, or fruit now, its hard for me to get enough calories just eating meat and veggies. I can only eat so much meat! I am 6' tall and weigh 132lbs...which I know is thin but I do look healthy, and this weight is normal for me. (and everyone in my family is tall and slender). But I obviously have a fast metabolism and need a fair amount of food to keep me feeling good. I am wondering about yams and sweet potatoes...would those be OK, or should I avoid those too?
I was just looking in to the GAPS diet, as well, and the introduction diet which seems to be a lot of bone broths and well-cooked meat and veggies sounds like it would be beneficial.
I am also working on having a positive outlook and reducing stress...I know it is a huge factor because my first flare happened right after a very stressful situation.
Sooo...to summarize, I think I will be eating mainly meats, veggies (minus nightshades), maybe sweet potatoes, yams and a little fruit (like twice a week)? and bone broths.
Any more suggestions welcome! =)