I am now gluten-free, soy free, corn free and nightshade free for two months, but it continues to be day-by-day. The change in my health has been dramatic. I was diagnosed with MS in 2003 and I immediately started on Avonex. While I had only one relapse (early 2004), the Avonex really bothered me. I had intense side effects that lasted 48-72 hours. I had brain fog, intense and fatigue, with pain in every area of my body. I felt nauseated nearly everyday I and had intense stomach pain. I had occasional bladder problems. In addition, the eczema I had since birth got worse. My doctor could not explain the near daily headaches and other symptoms (pain and eczema).
When I could no longer stomach the thought of living with the pain, fatigue, and the side effects of Avonex, I decided I had to try alternative therapies. My diet was already very good with no beef and lots of fresh veggies and fruit. I became intrigued by the MS Recovery Diet and decided to try it. Moreover, I read elsewhere that gluten was a problem for people with eczema. I eliminated dairy, gluten, yeast, red meat and eggs from my diet. Within a week, I felt better, but I begin to notice other foods bothered me, especially corn, potatoes, and beans. I eliminated these foods, too, and my overall health improved dramatically. After a month, I no longer had brain fog, fatigue body pain, or stomach aches.
Twenty years ago I stopped running (I regularly ran 40-50 miles a week) because the fatigue and heat bothered me. Five weeks ago I started to run again. No pain, no problems with overheating, or fatigue.
I have had some small setbacks and I have learned that I must be vigilant with my food. Any bit of gluten, soy or potato starch bothers me. Within hours I experience numbness, bladder problems, and I get nauseated.
I'd like to get off Avonex. Is this possible?
I posted a contribution to the forum when I started this diet two months ago, having been diagnosed as having primary progressive MS almost five years ago, when I was 56. There had been no indicators at all even with the benefit of hindsight until the latter half of 2004. The firstsign was numbness in my left leg, which, having ridden (and fallen off!) horses since I was 2 years old, I dismissed as a trapped nerve. When the numbness spread to the right leg the trapped nerve theory did not seem probable and I went to the doctor, who imediately sent me to the neurology department of a major hospital. I later learned that they strongly suspected that I had a spinal or brain tumour, and were totally baffled when none was found, and all they turned up in the battery of tests they carried out was a few lesions in my spine. They shot me full of Prednisolone 1000mgs i.v. each day for three days, and sent me home thoroughly 'spaced out'. It was only a year later that I found that 'MS' was written on my file. The wonders of the UK National Health Service!
Over the past five years I have become increasingly disabled, with numbness in my hands as well as both legs. I had to give up driving because I could not control either of my feet well enough to work the foot pedals and was reluctant to learn to drive with hand controls. In any case if I did go anywhere I was too tired to attempt to drive home again. I was tired all of the time, unnable to walk without two sticks,wondering how long I would be able to get upstairs to go to bed. I became totally dependant on my husband and two daughters. It would have been so easy to give in and grasp the sanctuary of a wheel chair, but I would not do that. All that doctors would do for me was huge doses of Prednesolone, because I was deemed 'too old for Rebif or any of the forms of Interferon. I was wondering how long I could hang on before I visited a centre fo volluntary euthanasia in Europe, because it just seemed totally hopeless.
At this point about three months ago I found Anne and Judy's book and thought that I had nothing to lose by trying the diet. I started on March 1st and everyone is telling me how well I look and the numbness is going from my hands and legs. I feel a lot stronger. Unfortunately my walking is not hugely improved- yet as I had had problems with the cartlidge in both my knees, with surgery on both, before any suggestion of MS, annd they are now stiff and a bit unreliable, but I have bought a 'Yogalates' DVD. I am thrilled to see results so quickly because I had given myself 6 months before looking for any change AND I have lost the weight I gained after the steroid injections. Life is good!
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.
I'm so happy to have found a place where people with MS have positive outlooks.
I started having MS symptoms at about age 17, after many tests and very vague symptoms I was told that I may have it some day but not at this time (what ever that means). I was not officially diagnosed until the age of 27. Over those ten years I felt vague symptoms and wobblyness in my walking, but I just ignored them.
I don't have pain and most days I am fine. I mostly can't walk for very long distances with out getting wobbly and I don't do well in my beloved high heels these days. I am now 36 and though my symptoms are not horrible all of the time, I am ready to start this diet and be healthy and happy.
All my life I have been very thin and have watched my diet low fat, no red meat, junk food etc. I think this has helped me over the years in the progression of the disease. Of course my neurologist says that there is nothing I can do to help but take my daily shots of Copaxone and wait. He says diet doesn't really matter. Going on my appointments is very depressing and discouraging.
Before finding The MS Recovery Diet, I read another book whose diet was so restricted. The culprit in this book was Candida. It basically cut out everything in my home as well as almost everything in a regular super market. I was so absolutey depressed while trying this diet. I was afraid of everything. I lost even more weight of my 100 pound frame. I was unable to keep up with my active daughter due to lack of energy. Regardless to say I am overjoyed about discovering this diet. I can eat fruit again!!
My question are:
Have most of you stayed on your medications after getting to your goal? Is it best to stay on them?
Do any of you ever cheat on special occasions? I had a glass of wine and a piece of pizza with the cheese taken off with a friend the other night and have been feeling guilty ever since.
I am open to any advice from you....
I was D/X with MS in 1999 at 28yrs old, it started with Optic neuritisand leg/back pain, things proceeded to worsen and I ended up totally blind, Paralyzed and on a ventilator.
Within about 3 months my eyesite had increased to being legally blind and has remained this same way; but I can see! I am so thankful!
After learning everthing all over again, I mean everything we take for granitit, talking, eating, using the bathroom, how to dress, tying my shoes; etc, this was in a rehab hospital where I learned also to sit up, propel a , work on balance and strength, walk between Parallel bars. After 10 years I am in a
wheel chair for any long distances, I am a wall walker at home and I take my walker in short distances.
I started this diet in April and I have seen great results thus far.
Bowel, it would take me over 1 hour to go & if time didn't permit I would not go for that day.
Bladder, I still have some urgancy but I have some time, opossed to simply starting to leak the instant I have an urge!
My vision, I am not as sensative to light as in the past, I can see more colors and I don't seem to have as many blind spots.
I still have allot of healing to go; but to know I have a say so is huge, we are talking about a debilitating disease that there is no hope for, I SAY NOT!
I am now hopeful, and I thank God.