I was diagnosed with relapsing-remitting MS in 1993. I had symptoms as far back as the mid ‘80’s; numbness in my fingers and hands mainly. The message that I was given in ’93 was that I could start on some meds right away but it was an option. The meds available would most likely have unpleasant side-effects and I was apparently managing well and effected by relatively minor symptoms. I opted to not start on any meds and that was a mistake.
My initial MRI in 1995 showed that I had at least 35 lesions in my brain and 40 or more on my spine. Surprisingly, my gate was virtually unaffected but I was beginning to have problems with my stamina and I noticed that I couldn’t jump very high; I was fortunate to work at a company that had nice sand volleyball courts for employees to use whenever we wanted and that’s how I noticed that I wasn’t getting any air for blocking shots but instead getting hit because my feet weren’t getting off the ground. That and a couple other symptoms that were a little more severe, i.e. loss of strength in my right arm, lead me to see a neurologist. I’ll never forget that first meeting either because the my neurologist did a double-take when he looked into the waiting room, called my name and I popped right up from my seat and walked straight up to him with ease. However, it was becoming clear that the disease was progressing and I needed to take action.
I had my first really bad exacerbation shortly after that meeting a short while before I began taking Copaxone. I began the drug but before I had a chance to get 3 weeks into it I had an even worse exacerbation that caused me to take a week off from work because of difficulties with walking.
After a several months, things calmed down and I began getting confidence back because the disease seemed to be under control. I was taking my meds regularly and met with my neurologist every 6 months and I didn’t feel that any cause to complain. This was the way things went for years.
In 2005, about 10 years into Copaxone, I began keeping a log, or diary, of issues that I felt noteworthy. I started doing this because I guess that I woke up or acknowledged that I was getting worse without having definitive attacks. I wasn’t able to walk as far as I could the previous year. I was stumbling more. I was working more hours but getting less done. Things were definitely going south.
I talked with my neurologist about it and he suggested that I try a couple other drugs to go with Copaxone. I began taking Aminopyradine first which helped with stability & walking and then added Baclofen I while later to also help with pain. I was starting to have significant pain in my legs. Advil didn’t help either.
In 2007, I finally had it with the meds because it felt the only thing that had changed in the past two years was the amount of drugs that I was taking. My stamina, balance and gate had really begun getting worse…bad enough that I felt like I was heading directly toward getting a wheelchair and modifying my new home’s doorways. I was scared. I had heard about the MS Recovery diet a couple years before but at the time and didn’t give a second look. This time however, I gave it more than a second look, I dove right in. I stopped Copaxone and baclofen completely and I’m down to 30 mg of aminopyridine per day.
I received mixed reactions to my decision to start the diet which added to the difficulty. Regardless, I went cold turkey and cut out everything. I read that it might help to cut foods bit by bit but that’s not me. I have very strong will power and if you recall, I had gotten scared of what my future was looking like.
I cut out dairy, eggs, glutens, everything. I’m Italian and was a big consumer of pasta. Lasagna! Oh man do I love lasagna but it got to the point that I’d have trouble standing up from the dinner table after eating it. I cut it out. I lost 15 pounds pretty quickly and I didn’t have a lot of weight to lose. Oh well.
Right off the bat, the pain was gone. No doubt about it either. The pain was gone. I also began to see other things too. The days that I marked as good in my diary were getting more frequent. I was actually able to exercise; however, lightly but none-the-less I was able to do it.
Today is February 3rd, 2010 and I’m 21 months into the diet. My diet consists mainly of chicken, rice, some fruit, water, salad (not enough though) and nuts. My weakness is chocolate. I love milk chocolate. I don’t get too out of hand with it but if you put a half dozen Frangos in front of me – they’ll be gone in no time. Also, I haven’t done a very good job of diversifying my diet. The chicken dishes that I make are simple and taste good. Thai curry, chicken marsala to name a couple.
I’m not one to ask for help especially to post on blogs to get ideas but I feel that I’ve hit a rut because it seems like I should be seeing better results after nearly two years. I know that everyone is affected by the disease in different ways and I realize that MS has had about a 25 year head start and I should expect that healing will take time. My balance, gate and leg strength are my main problem. I seem to go through phases, 1 or 2 weeks at a time, where I feel really good but then I’ll hit a low point. I’m not sure if it’s because I’ve over-done it on the WII Fit or something else like my specific take on the diet. It’s just frustrating.
Frustrating or not, I’m sticking with the diet because I do believe in it and i'm still very hopeful.
-doug
Thank you....and also to the
Thank you....and also to the previous post-er. I am hanging on, and this site helps - just reading encouragement is helpful. I really don't want to be so desperate. I want to do one month strict on the Paleolithic diet as you suggest; perhaps I am just not being strict enough, though I am generally pretty good. I recently stopped eating corn and things with corn in it, just to change something, been a week or so, we'll see. I do take supplements (EFA, D, E, C, B complex, Cal/Mag, Pro-Biotic) and realize my digestion is sensitive, so I try not to assault it! I am also on Copaxone right now. Thank you again for your encouragement...I am awaiting a brighter day, I know it has to happen! Best, Kathleen
Hi ya, I live in the London
Hi ya, I live in the London area can anyone recomend an Allergy Clinic that I can have the York6 test done. I have been diagnosed with benigh MS, although the consultant never actually uttered there words to me he just politely copied me in a letter that he sent my GP. Anyway would appreciate an bit of advice.
Hi there, I am sorry you are
Hi there, I am sorry you are feeling so low at the minute. I know how you feel, it took me 20 months on the diet before I noticed any difference, but then I did start to improve, so dont lose faith in this diet. I was getting desperate, just like you, and decided the only way was to go "strict", I started to eat only lean protein and non-starchy vegetables, with nuts, seeds and oils but keeping to below 15g saturated and 50g unsaturated fat every day. I got very very much worse, after 4 days I felt like I would prefer to die but with the help of others on this site I held on and soon I started to feel an uplift in my energy, I was less depressed and was sleeping better, after about 10 weeks I noticed my legs starting to improve as well. Try to plan what you are going to eat and have allowed food on hand for when you want a nibble. I use some cooked turkey or nuts and just keep them in the fridge. It is tough and I was terrified I would starve, I didnt starve and I now know I am on my way to recovery. Give it a go, you too can do it, Good Luck.
Oh damn, your story is quite
Oh damn, your story is quite depressing! I am so sorry you haven't improved yet.
Are you on any MS medicine by the way?
How exactly are you doing the MS diet? I suggest you try for at least 1month (without cheating) to follow the Paleolithic diet, for sure all food triggers will be eliminated with it. Then you can start experimenting to add different foods back. You can eat fruit, vegetables (no legumes), meat, fish, nuts and berries. It's not easy but you have to start there. Also I would suggest a detox to clean your system.
I have been now 3 years following the diet and taking MS medicine and had only 1 relapse! Which was caused by me going off my diet!!!
Also are you taking any supplements? I take multivitamins with extra vitamin D and omega 3,6,7,9oils.
Last time I had a relapse I felt at moments like the diet wasn't working but I still followed it and my relapse lasted only a week!
Try to be strong and overcome this!
I just want to say, into
I just want to say, into month 7-8 and I have cheated myself with sugar and chocolate lately, mostly, but I am getting worse, and have never sensed a difference, even after the first blush of weight loss.. Low energy, right leg not bending well, sitting and sleeping uncomfortable, weak back and legs, typing with 2 fingers, numbness in my hands, and depression...it is just worse all 0ver, and I am having trouble thinking about much else, while I try to work full-time (now 2 days at home) and exercise (barely can get out of the car on my walker to get laps done). Help, I am desperate now, and believe it is only going to get worse. I can't enjoy anything. I am trying to be zen about it and stay present, but it only helps for a bit, and I feel like this whole idea of diet and nutrition is just a hoax we are to put some faith into. I don't mean to be so dark, but seriously, I am looking here for ANY CLUE that I can grasp to help me get through this and start enjoying the good and fortunate life I have.
Nicole, that recipe sounds
Nicole, that recipe sounds simple enough – thanks for the non-dairy, soy free butter tip too; I cut out legumes completely so I’ll have to watch for reactions to the pea proteins.
Doug
Nicole S. Doug asked for
Nicole S.
Doug asked for dipping oil recipe. For bread, I would use 1 tbsp. olive oil, 1 tsp. balsamic vinegar and ait of pepper or rosemary. You could chop some garlic in if you feel like it. I also found soy-free, dairy free "butter" at Whole Foods by Earth Balance, but it does contain pea protein, so if legumes are bad for you, watch out. Also, it has 2.5 gm. sat fat/serving, so I'm stingy with it. But I do melt it for rare lobster dinners, then stretch it with lemon.
To Doug: Thanks for your
To Doug: Thanks for your story. Like you, I went cold turkey on the diet and experienced a lot of weight loss and some energy loss at first. It has been 6 1/2 months and I am determined to stick with this, but it's hard. This year will be 10 years since my dx (symptoms began in 1993) of secondary progressive. In the last year, I have progressed from a cane to a walker full time. I am trying so hard to stay positive. I come to this site to just get a boost, and I thank you for sharing your story. I'm in this for the long haul, no matter what. I would like to see some reversal of symptoms before too long, however. Keep the faith, I will!
Thanks to all the fellow
Thanks to all the fellow chocolate lovers out there, like Nicole and Vikki! I'm checking out the mentioned stores and websites, and also thought I'd share one I found for gluten-free, dairy-free, peanut-free, tree-nut free, soy free, egg free and casein-free chocolate chips from Enjoy Life. They can be ordered online or they have a store locater to see if available near you. This is so great that we can all share with each other helpful tips, etc., and be a real support group for each other. Also, Doug, I hope that blueberries don't prove to be a trigger for you. I eat them every day for their protection of the blood brain barrier, as I read someone else posted they do also, and I just like them! They haven't posed a problem for me. Thanks to everyone and continued success to us all! Thanks to Judi and Ann for this diet and this forum where we can share.
Deb
Will try the chocolate and
Will try the chocolate and bagels out, thanks Nicole. I had forgotten how much I missed bagels.
Doug I can sooo relate to
Doug I can sooo relate to you. I was dx. in1974 and started to use a cane in 2000. I am also Italian and pasta was my staple. I continue to work 3 days a week as a clinical social worker. I also started with the relapsing and remiting ms and have progressed to secondary progressive type. I was getting progressively worse even though I was also on Copaxone and several other drugs. Approximately 3 years ago I stoppped using dairy and lessen by intake of wheat and grain. I also started excersing and started to feel better. I then came across the MS Recovery Diet and tried it. I also went cold turkey and suffered from depression and anxiety,but I continued because it was better than being on the medications. My family couldn't understand why I would subject myself to such restrictions. (cutting out foods you are accoustom to cold turkey can do that)
I started the MS diet in May 2009 and I can tell you I feel much better. My stamina is better and I'm able to do more. I use a cane or walker in the house and use a scooter for long distantes such as work, the doctors, shopping and more. I have found ways of helping my cravings, such as rice pasta , marinata tomatoe sauce by Victoria(no restricted foods in it) and small amts. of dark chocolate from the health food store with no soy. I also eat turkey sausage with stir fried peppers that are in the frozen food section. You can even use polenta and put sauce on it, just some suggestions. But don't give up I think it's worth a try and it seems to be the safest way to go to combat this condition. Good Luck! Vikki
My recent post replying to
My recent post replying to Nicole regarding chocolate & gluten free bread applies here too. I’ll be checking these out asap. As for fructose, I’ve been eating blueberries fairly regularly but I haven’t tracked my symptoms to identify them as a potential trigger; I certainly hope that I find that they’re not a trigger because that would be a big disappointment.
Thanks, Doug
Thanks Nicole! I'm going to
Thanks Nicole! I'm going to give this chocolate a shot. I am amazed how much I missed having a little chocolate now and then. I mean it has only been about a week since I got back on track excluding it from my diet and I really wasn’t eating all that much. I’ll try samisbakery.com too. By the way, do you have a good dipping oil recipe that you could share?
Thanks, Doug
Nicole S. Soy-free chocolate
Nicole S.
Soy-free chocolate is available if you get dark chocolate. Try Vosges or Michel Cuizel, available at Whole Foods. I also found Vosges on the net. It is surprsing how little sugar it contains. I buy gluten-free baked goods from Sami's Bakery in Tampa, FL, www.samisbakery.com. I live in Colorado, so it is shipped to me. I eat their flax and millet bagels, buns and bread. No yeast either.
Deb Good advice on the
Deb
Good advice on the fruit. I recently found out fructose is one of my triggers. Soy is one too and it annoys me that it is in chocolate cos I'm not intolerant of dairy. Even the Austrian chocolate I get from Aldi has it. I think I'll write them a letter and see if they can source some soy free chocolate. It's pretty high up on the ingredient list so there must be quite a bit in there. It's in my vitamins too so I'll have to go to vitacost or swanson and find some soy free multivitamins. My dietitian turned me on to some rye bread for people who are wheat intolerant like she is.
It's at http://www.mannaorganicbakery.com/
Dave
Vegan, gluten free and soy free chocolate http://shop.equalexchange.com/ProductInfo.aspx?productid=18601
OK, you’re pretty good at
OK, you’re pretty good at this! After reading your replies, I realize that I haven’t been doing the best job following the diet because I have been focused just on cutting out the bad food, except for my recent cheating, and not taking a broader look at my intake. For example, you mentioned garlic and onions as possible triggers. Yikes, I use them both especially onions which I use a lot.
The common trigger foods that I’ve been eating have most likely been affecting me. But to be honest, part of the reason why I let myself deviate from the diet was due to my not getting the results that I had hoped to get even though I’ve told myself that it will take time. Deb, what you have said is going to help me re-focus on effort on this whole thing. Thank you for that. It’s funny, I certainly didn’t expect to get helpful responses so quickly but this is great. Just talking about it has been helpful.
Thanks, Doug
I forgot to mention that I,
I forgot to mention that I, too used to dip into the chocolate chips! Unfortunately, they do contain soy lecithin, corn syrup, etc. I forget now exactly, but you can check the ingredients label. Lately, I've completely eliminated even plain unsweetened cocoa and cut back on the Stevia dramatically and reduced fruit consumption to reduce dextrose/fructose consumption as suspected culprits. I don't know which was the culprit or all, but that has eliminated all the foot pain that I would get occasionally with sucrose and soy. Even some bouillon brands contain soy, sugar, yeast, and/or dairy whey. Modified food starch can be gluten-containing wheat or soy As far as the periods of being unable to exercise, I, too have those days which I can't explain, and maybe it's just a simple case of being tired and not enough rest. One other thing about spices: paprika and chili powder are made from red pepper pods which are nightshades. For some people these are problems. Any of these triggers may be mild and/or only a problem if used repeatedly or to excess. One comment in the book is to rotate even nuts and oils, and remember in all things: rotation and moderation. Become a serious label reader, even medications and supplements may contain dairy, gluten, or soy. Spasticity/stiffness is a problem for me in cold weather, so don't know if that's the case for you. Not sure how much diet can help with that, but I know diet has helped with stamina and strength, and heat-causing fatigue tremendously for me. It's also dramatically increased cognitive issues. Best to you with continued success!
Deb
Good job on the flaxseed oil
Good job on the flaxseed oil and olive oils, but my only suggestion would be to possibly add maybe 2 more oils and rotate them on a 4-day basis. I don't know if that will make a difference, but I do know that when I began the diet, that was something Ann or Judi, not sure which now, reminded me of in response to a question of mine. I ate flaxseed everyday and found that I had to stop that and put it in rotation. We're all different so that may not be the culprit in your case, but it's a thought. Other oils are walnut, sunflower, safflower, and/or canola. When you cook for your family, use whatever oil is in your rotation that day for their foods as well. When you take your son to Burger King, maybe you could order a salad or something more compatible with the diet than a whopper. The whopper contains other triggers than the beef fat such as cheese, gluten-containing bun, egg-based mayo, tomato (a night shade food), french fries (another nightshade food), etc. Are these triggers for you? Do you notice symptoms after consuming these? Do your weak exercise periods coincide with consumption of these foods? Remember that at Burger King, if you choose a breaded chicken or fish sandwich, they will still contain gluten in the breading and the bun if gluten is a problem for you, which it is for me. There are many unseen triggers in foods that sometimes take time to figure out, but you're doing a great job. Even spices can be triggers, such as, cinnamon, garlic, onion, etc. As I mentioned before, soy is a problem for many and worcestershire sauce, sometimes used in burgers, contains soy. Hang in there and try to keep a food and activity log to try to correlate the good days and bad days with food and activity. This sometimes takes real investigation to determine some subtle, hidden triggers. You'd be surprised how many foods contain corn syrup or fructose products, which can be a problem for some if in excess, which it is for me. Everyone here can be your support system as we share personal experiences of what works or doesn't for us. These are just some thoughts that may or may not be helpful to you, but keep at it. You're doing great!
Deb
Great feedback and thank
Great feedback and thank you! For the first 16 months, I held to the guidelines of the diet without skipping a beat. However, in the past 4-5 months I have slipped back into some old routines. Sometimes out of laziness and other times because I think just a little bit won’t hurt. The worst is I started eating Burger King Whoppers when I take my son out; and I’ve found that even though I have had great will power, I have been slipping up more often. Sneaking chocolate chips from my wife’s baking supplies is really sad too. I do feel ashamed that I’ve allowed myself to give in to these!
As I said before, I tend to not reach out but decided to because I realize that I haven’t been faithful to the diet and/or myself. But that’s why I’m here. I don’t have a strong support system either which hasn’t helped so I have to rely on myself to keep the faith and belief that I’m doing the right thing.
You mentioned food rotation & oils and I would say that I’m not doing a very good job at that particularly with rotation; ideas? I do take a tablespoon of flaxseed oil every day or at least every other day. I started that about 10 months ago. I cook with olive oil regularly too. But again, chicken is a main part of my diet. Some seafood, e.g. shrimp or fish once every couple of weeks; sometimes more frequently.
A big part of my problem is that I make my own food and my family has their’s except on the days where dinner includes something that adheres to the diet. I’m not working anymore and now my wife is. She’s the good cook and I’m doing my best to prepare stuff for them and myself. There are days, a lot of them, where I just don’t feel like it and take the easy route.
Getting enough rest is something that I’ve always have had a hard time with. I stay up too late reading and other random stuff. Exercise is an area that baffles me. I seem to go through phases of 3-5 weeks where I am able to work on the WII or other routines 30-40 minutes every other day but then I’ll sink back into a state where I can barely go 5 minutes. Spasticity can get pretty bad sometimes and i can't attribute it directly to anything that i've eaten.
I don’t feel like I’m doing too much on the good days but I must be. I just am impatient and want to prove that this works and that I’m making progress.
thanks
Congratulations on your
Congratulations on your success and willpower! My only questions are: are you consuming and rotating the healthy oils? are you getting enough rest? you said you love milk chocolate....do you notice any symptoms after eating it? Dairy, sugar, cocoa, each can have effects for some people. Most chocolate products contain soy lecithin. Is soy a trigger for you as it is with so many of us? Try not to overdo exercise. My only suggestion would be to continue to keep your food log and try to note what you've eaten when you have problems. The diet has been great for me, but I still have some problems with balance, and my gait is stiff in cold weather. Hopefully, some others will offer some tips, as well. Keep at it and best to you!