Has anyone beat relapses of MS with diet alone?

[ceeweed]

I have just been diagnosed with MS and so far it has been only numbness and L'hermittes as my symptoms ... Dr wants me to go on DMD and I am considering waiting until my second attack to see how it progresses for me ... and after reading so much about nutrition and supplements with MS, I am wondering how much it is true and if anyone has succeeded with this treatment alone in decreasing their relapses????

I also understand that reducing stress is also key and wondered how many others have also found this to be helpful in relapses?

I am concerned however of where and when and how the next attack/relapse will occur ... so want to do whatever is reasonable to slow down the progress.

Thanks so much

[supermum_ms]

Don't worry about being judged here!

I cant even think of anyone who is like that (judgemental), seriously this forum is not like other forums, there just isn't anything MS related that we wont openly talk about with respect and support of each other.

I've said it many times before, but this is a great place filled with wonderful people from all over the world! Together we make this journey easier by our collective knowledge, experience and support and understanding of the weirdly odd! lol

Cheers.......JJ

PS good luck making a decision!

[ceeweed]

Thanks everyone for your support - i have been so afraid of being ixnayed from your community if I end up making the choice not to go with any DMD's - i completely appreciate everyone's decision to do what's right for them - and i don't judge, so don't want to be judged either. IT's a very difficult decision to make indeed!

sigh. but i so appreciate being able to talk about it and hear everyone's stories.

[Lulu54]

Hi Carol,
this has been an excellent look at how the diet question stimulates lots of thoughts and well thought out ideas here.  We kick this one around with some regularity.  Good luck with the next steps in making your decision - we all have to do what is most comfortable/acceptable/agreeable  for us.

best, Laura

[debgen]

Hi Carol!

It really sounds like you are on the right track with a positive attitude! Please keep in touch

Hugs,
Deb

[ceeweed]

Sidesteps ... sorry to hear about your vision loss - and after making such a huge step to correct your vision. Just when you thought you were free ... argh!

It's very interesting that you say that you would have started the DMD's rigt away. OH I wish this was an easier decision. I agree that I don't want to put all my eggs in one basket ... but I hear some successes without DMD's and many successes with them.

Thanks

[ceeweed]

First off, thank you all for all the responses .. I am so glad this has turned out to be such a great thread!

Personally I am trying to prepare my team so that my next relapse may be helped without steroid intervention...call me crazy, but i am going to try.

And thank you Deb for all your points! All things I will be considering. I have already started a calendar of my activities and symptoms so I can better 'remember' what the triggers are. I too believe it is stress, heat and overdoing it physically. But time will better assess that.

I am usually relatively introverted .. although have lots of friends, so for the first time in a long time, i have actually been calling them and going out regularly! And exercising at least 5 x a week (although I have always done that except through this first attack ... which totally threw me off my kilter)

And I have been watching intake of all those nasty processed foods and refined sugars. (yum - boo).

I am looking into acupuncture as well .. but also have a PT on standby that I really like.

Really I am blessed with many positives ... and think this is all finally starting to turn around now in my mind - you are right - at first, this can all be rather daunting ... it's not like it's cancer, but the long diagnosis, and the unknowing for so long, and the unknown of what's next is frightening at first - the back and forth from denial to reality takes awhile ... then you just get on with it! ( i suppose).

And joining this group has been wonderful!
Thanks to all!
carol

[Sidesteps]

I am also one that is seeing a team of specialists. I have a naturopathic MD that is part of my MS specialist team and I see him. He has me following a loose Swank diet. No red meat. Low dairy and only non-fat. Low sugar. High in protein. High in omega 3's. I mean really high. Clean diet. I take supplements as well to offset my deficiencies in Vit D and soon B12.

When I am following my diet. I do feel better. I notice my vision is quite a bit better and my twitching is improved.

I also follow a lot of Deb's advice with her points. I take Avonex and all of this has reduced my flares quite a bit even in severity it seems. I am only 9 months into taking my DMD. The full affect is 1 year. I was flaring like Alex but most of my symptoms are vision and sensory. I will be honest my vision is very I,present to me. I had LASIK and had better than perfect vision. My right eye (which had ON) is now 20/30 on a good day. If I had an opportunity to avoid the damage to my vision by them putting me on a DMD at my first flare, I'd have taken it.

[debgen]

Hi and welcome!

You certainly have started an excellent thread :)

I have had RRMS for 30 years and have had many ups and downs which is so typical af this unpredictable disease. I am not one to give advice, especially since you have already gotten so many great responses. Her are the few things that have worked for me over the years:
- get in a daily excersise routine that involves stretching, strenghtening, balance and cardio.
- get PT as often as you can (I go weekly for an hour)
- learn your triggers. Mine are heat, humidity, stress and overdoing myself physically
- eat a sensible, healthy diet with lots of fruits and vegetables but as Lulu said, don't put all your eggs in one basket
- take a vitamin D supplement
- surround yourself with supportive people ( to quote Oprah..."Surround yourself only with people that lift you higher")
- take a daily nap!
- most important, find the DMD that works best for you

I know there is a great deal of anxiety for newbies, just keep being informed and proactive! Remember we are all here for each other, it really helps :)

Good luck,
Deb

[zigfried]

Thanks for your advice!!! I dont take the meds because im afraid i will have a bad reaction and die. Now before u think im crazy lol i have had severe allergic reactions to meds in the past such as antibiotics etc... which makes me terrified of ANY meds including otc stuff. The fatigue is bad though and it can come out of the blue i suddenly need to lay down but cant. Im at college from 7 until 5pm then work from 5:30. Til 10:30. Then study for 2 or 3 hrs then bed. Im trying to get over my fear of meds i also have swallowing problems i choke about 3 to 4 times a month VERY scary.  My joints hurt every day but its hard to tell what is ms and what is ups lol.  I cant leave ups they have the cadillac plan of medical insurance and i need it. I want over this fear to start meds to slow this thing down. Any suggestions?

[Lulu54]

The DMDs don't stop the progression but they have been shown to slow the rate of relapses.  It is during those relapses that most of us accumulate more physical deficits.  The healthy diet is a good thing, but there are other tools out there that we can also use to keep this MonSter at bay, such as the drugs.

You UPS workers have it extra hard these days thanks to people like me doing all my shopping online.  Thanks for getting my packages to me!

It would be hard for us to guess whether your new exhaustion is from the job or the MS.  you might talk to your neurologist about the fatigue, as well.  There are some good drugs that many people respond well to.

[zigfried]

I to have a hypersensitivity to medications. My neuro pleads with me to try a med but im terrified even of copaxone due to my hypersensitivity. I follow a diet high in omega 3 lots of fiber and less than 10 grams of saturated fats. I feel pretty good. I have been doing this since my dx 3yrs ago. My mri is the same as then and besides extreme fatigue and occassional dizziness havent had any symptoms. Yesterday though i woke up and my calves hurt badly for no apparent reason. Im wondering if this is a new symptom? Spacisity mayb? I work at ups loading 18 wheel trucks at a rate of 750 packages an hour. Very hard to do with my fatigue but gotta work. The packages range in weight from 1lb to 70 lbs. And lifting 3 thousand of thm a shift makes me very stiff. Mayb thats my ms to?  Will my disease progress faster without meds?

[rendean]

Hi and welcome!
I'm the missing purple flower who hasn't been on here for ages due to huge relapse.  I am slowly recoveing my energy and strengh and your post caught my eye.

The question of diet is one that has been asked on here since I was a member back in ?2007?.  Lots of discussions pro and con.

My stance is that if diet alone would prevent MS relaspes, we would ALL be on it and  there would be no more relapses. I am of the school of thought that many expressed; that eating healthly and exercising to our body's ability along with stress reduction is best way to prevent relapses. MS obviously has a mind of it's own since I in retrospect  had symptoms, the same I have now, back when I was 20. That's  over 30 years. The ugly relapses didn't occur until the past 4 years or so. So, one day hopefuully the scientists and researchers will unlock the key to this miserable illness and end the suffering.

Best to all,
Ren

[BOK2Bjan]

This is such an important thread.  I was in a very abusive marriage for 30 years and finally got out when he tried to kill me and was arrested.  I found that I had developed so many autoimmune diseases that it was absurd.  My doctor, myself, my kids and family - all believed that the stress had a huge role in developing the illnesses.  My family has a history of Autoimmune diseases, BUT, when you're predisposed and then live in a stressful environment - you're bound to get a big response.

I tried methotrexate for the SSc. but had to stop.  For the MS, I went on Copaxone, but after trying to the best of my ability, I just couldn't tolerate the skin side effects.  Then I went on to Interferon B, and had the flu AND skin side effects.  I tried that too until my doctor demanded I stop.  So by then, I'd developed type 1 Diabetes and since I had at least 5 or 6 other autoimmune dx, we decided to try IVIG infusions (especially since I was low in two of the subclasses of IGg.  That is a long process and once, I did it every day for 10 days - 6 hours a day.  That was brutal.

I don't honestly know whether any of those drugs helped anything.  However, when I got the dx of Type 1 DM, I fought with diet with everything I had.  I went an entire year without carbs.  It was amazing.  It took awhile, but I ended up lowering my BS significantly.  I also felt better in general.  At about 14mo, I started adding some carbs and still have the improvement with the Diabetes.  I haven't been tested for the antibody levels, but assume it's better.  I still just take short acting insulin with a pen and regulate it on my own cause I want tight control.

I think we all know that since these illnesses are very individual and very unpredictable, it's hard to know what we're doing or what we're taking is effecting our disease.  We do know, though, that having a really healthy diet and exercise regimen is good for us.  I truly believe that it is a must and either combined with the appropriate medications or if you can't take them, alone - it can have a very significant effect.   I have low vit D,and even though I've been taking large amts of supplements for years, it stays low.  So, I'm not able to absorb it some how.  I believe that the GI tract is a huge part of our immune system (hardly my idea - it IS a large part of  our immune system) and since my GI tract has been so damaged from the SSc, it has made me more susceptible to other diseases.

I am an artist too and was doing interior design and home design when I got sick.  I still can paint but don't as much as I should.  I love it and was so sad to not be able to earn a living anymore.  I'm on SSI now because I didn't work enough quarters while married to qualify for regular Disability.  I got Disability without anyone's help the first time I applied due to being so organized and having so many letters and records from doctors that proved my disability.  It's just the TYPE of disability I ended up qualifying for that is the problem.  So, I'm living on 600 a month plus food stamps.  It doesn't give me many choices for getting help with "programs".  I can't even get physical therapy.  It's not covered!

So, I need to use my own determination to fix my own meals and do an exercise program on my own.  I KNOW it helps.  I just need the energy to do it and I think it will create energy.  Energy begets energy.  Hey - it's hard to do, so- glad there are others here who are trying to live a healthy lifestyle.

Blessings to you and stay in touch - watching inflammation levels is important too.  Jan

[ceeweed]

Thanks Julie - that is comforting knowing that you too don't normally like drugs ... and I am glad it is working for you.

I am still unconvinced, but am looking for another neurologist to help my decision - one who specializes in MS.

[ceeweed]

I agree with you guitar girl (about books and sales) - that is exactly why i asked the question ... i am just not fond of drug companies. And my current neuro says that the drugs only really slow progression by a matter of a few short years.
How does he know that though? not sure. i didn't think copaxone was used that long. THen again, he never looked at the MRI images ... just went by radiologist report.

Anyways, sorry to hear you had to stop performing. THat must have been a very difficult time. Writing is good too though ... and so is playing for pleasure!

I do contemporary landscapes. I paint solo works, as well as my husband and i are collaborators - he bas relief sculpts the same landscape subject on a solid sexy mahogany panel, and then i paint http://www.claustro.ca/claustro_piece_070/ (this is an example) - but my solo works are under carol currie.

I like rocks!

[jujuminx]

Welcome!  Great question, great thread here.  Often times this question takes a negative turn rather quickly for reason previously mentioned.  

The truth as you have discovered, is different for everyone. It's completely normal to want to control what you can and give yourself the best possible chance at a normal life. You will have to figure out what works best for you. As Alex said and many will tell you, even those who promote eating to "control"  MS as best one can, doesn't mean not taking DMD's. Even the best known MS diets advocate using all resources at one's disposal to fight this disease.

Through trial and error, I have found that stress, rather than diet is the biggest MS sx trigger for me. That is not to say I don't watch what I eat by limiting meat, processed foods and dairy, but there isn't a specific diet plan I follow. My main focus is eating whole foods, staying away from foods that I have in tolerances for, exercising, getting plenty of rest, taking my copaxone daily and managing stress in my life.

As Lulu said, I don't put all my eggs in one basket. I too am very sensitive to drugs. Extremely so.  Before my dx of RRMS in 2010 I hadn't been on any daily prescription medications.  It was rare that I would even take over the counter medicine for a headache. The thought of taking a drug every day was frightening to me.

Yet here I am 28 months after dx taking my copaxone everyday and I am grateful for the opportunity to do so. 20 yrs ago, there were no drugs to help slow the progression of MS, now there are many to choose from and they scientifically show that for some people they work. Why wouldn't I give myself the chance to take advantage of that?

I wish you the best and I look forward to reading more of your posts as you figure out what path works best for you.

Julie

[Guitar_grrrl]

Hey, ceeweed!
The folks pushing diet are making money with their books and videos.  We PwMS are hungry for information and options.  

I really like Tysabri.  I like that it's taken only once every 28 days, and since it has to be done at a participating TOUCH infusion site, compliance is a non-issue! I have no side effects with it, other than being tired for the rest of the day it's infused, and about 4 days before my next infusion, my baseline fatigue, which is significant with me, is ramped up even more.

I had to stop performing, but I'm still writing, and I play for my own pleasure. :-)  What sort of art do you do?  We have a few artists in our midst, including our own HVAC, who is a gifted painter.

Rock on!

[ceeweed]

thanks lisa for your input as well ... i agree with you all that at the very least diet can only be good for us !!!! But I am sad to hear you are still experiencing so many symptoms regardless of your diet changes ... that would be very frustrating no less!

How do you like tysabri? do you have many side effects with that?

Like you, I am an artist as well, where our fingers/ hands are important to our art.

But I agree with you, that you have to live well despite the mssesy disease ( i like that!) clever!
thanks

[ceeweed]

Thanks for your response and joining in this thread!

I kind of suspected hormones would have something to do with flare ups etc ... afterall - i am of that peri menopause age and changing hormones can defenitely stress the system.

I have in the past had vitamin d checked and it was low but that was before this dx and therefore i am going next week to get it done and take the results ... so i am defenitely taking action there. Already, I am taking 4000iu of vit d now. I also suspect that since B12 deficiency mimics MS that that vitamin is important too so will have that checked while i am at it.

And yes, i am trying meditation and other exercises to reduce stress. Of all the formulas, I find that one the hardest to get into.

Hope you are feeling better and that you get resolution to a dx soon. The unknowing is crazy.
carol

[Lulu54]

what a great conversation covering lots of good information.  Remember that if one DMD doesn't work for you or you are overly sensistive/reactive/allergic to it, that doesn't rule out the other DMDs.  The drugs come from a variety of different compounds. One of the most exciting things in recent MS research is recognizing that one treatment does not fit all for MS - they are studying the biomarkers and soon will be able to suggest which DMD we will respond to best.  That will eliminate the trial and error, such as taking Copaxone but not being able to tolerate it.  Or finding that our particular type of genetic makeup and MS will respond best to an interferon-B but not interferon-A.

I won't disagree about a good diet making everyone feel better but I'm not about to put all my eggs into one basket on this one.  There's too much to lose if I would be wrong.  

I'm with  Lisa - just keep doing the best we think we can.

be well, Laura

[Guitar_grrrl]

Ceeweed, nice to meet you!  I'm doing the diet angle (Paleo, ala Terry Wahls), and I feel pretty darned good, from a digestive standpoint.  But I still have MS, and I still get killer spasms day and night, as well as a host of other MS symptoms.  Oh, and I'm on Tysabri, too.  I figure I'm going to do as best as I can, eating-wise, excercise-wise, and using DMDs on top of it all.

My angle?  I'm going to live as well as I can in spite of this MeSsy disease!
Best of luck!
Lisa

[kwarendorf]

" improving my diet and overall health have definitely helped."

Bingo! Regardless of what we may be fighting, being as well equipped as possible for the battle helps :-)

Kyle

[jumpinjiminy]

I'm guilty of the over-thinking tendency as well. I have no diagnosis but they have found inflammation in 4 different organs (most mild) and it looks like my nervous system has some kind of inflammatory process going on as well. I've read a lot about MS, but I've also read a lot about inflammation in general along with other autoimmune diseases.

There is research pointing toward stress, poor diet, hormonal fluctuations in women, and lack of exercise as increasing inflammation. I've noticed with my own body, these things do cause flareups, along with excessive exposure to heat, illness, overdoing it and lack of sleep. Also, I've found an excellent study that concludes excessive exercise (anything above and beyond a person's limits) also causes an inflammatory reaction in the body.

Using this information along with tracking my own symptoms, activities and diet, I've been able to figure out most of my triggers. I saw a PT who taught me how to exercise and slowly increase abilities without causing a flareup. One neuro immuno pointed out that heat increases the inflammatory process. When I'm having a flareup, or feeling like one is coming on, sitting under the hair dryer at my beauticians is enough to rev it up for a few days. Not kidding. When I'm having a remission, I can get away with a little carelessness that way. Another neuro pointed out that stress seems to be a factor (first major flareup in over a year after a big hike along with increased stress at home). He advised nipping that home stress in the bud.

There is also research that indicates relaxation therapy of any kind reduces inflammatory markers in the bloodstream. Things like hypnosis and meditation have been documented to shift the immune system more toward the anti-inflammatory side.

Also, Vitamin D is supposed to play a role. Have you had your levels checked yet? Mine were low, and when they finally got up into the high normal range (67ish), I felt much better and had fewer, milder and shorter flareups.

Finally, there is a lot of buzz around diet and inflammation. Here's the key to this though, most of these diets recommend basically the same thing - cutting back on the fats, meats and grains, and replacing them with fruits and veggies. Now who wouldn't feel better eating better? There might be something to it, and there might not, but it can't hurt to follow a healthy diet plan. It will only help.

After all of this reading and researching, recognizing and minimizing my triggers, exercising gradually and regularly, and improving my diet and overall health have definitely helped. I may not have MS. Nobody knows what it is. It acts a lot like MS, and it might be, but I'm not on any DMDs and these changes have helped. I feel so much better than I did two years ago when it all blew up out of the blue.

[kwarendorf]

Lack of relapses is a hallmark of SPSM. Rather than well defined periods of recurrent/new symptoms and recovery experienced in RRMS, SPSM is often characterized by a slow, constant progression of the disease. As such, having SPMS and going 14 months without a relapse is entirely unremarkable :-)

Kyle