I am now 33 years old I've had MS 4 at least 8 years. I've been in a wheelchair for the last 6 years. I have been on Copaxone and tecfidera. I have horrible spasticity in my hamstrings and back. Which I believe is the corporate for me not walking. I have been off tecfidera now for at least eight months. I am on alkaline diet. Mostly all vegetables Sometimes some meat. I eat nuts and stuff to keep my protein up. Since being off the medication I have felt better than I have ever felt I believe a lot of it has to do with the vegetables. To me they are my medication. I'm scared to get on any medication again. The only thing I believe I would try would be hsct transplant. (Stem cell) there was this video called betrayal what they don't tell you. And talks all about the food you eat and the bacteria's you need in your stomach. Many scientists and doctors believe that all autoimmune diseases derives from your stomach. If anyone wants to look up this video it is called betrayal by dr. O'Brien
My story: I am now 33 years old I've had... - My MSAA Community
My story
Have u read the Wahls Protocol? She is a doctor with MS and wrote a book about how she changed her diet dramatically to help manage her MS
No I have not but I will take a look at it. Thank you for the info
She also wrote a cook book. I got both on amazon.
Dr Wahls went from dignoses to not being able to walk in a short time. She tells how she did her reseatch and how it helped her.
There r 3 levels of her diet and i am still on level one. Like you, changing my diet has made a world of difference in how i feel. You probablly do a lot of the diet already. She is very much into vegtables and fruit and protien. The cook book even has recepies of how to make ur own nut milk and nut butter. Its all so yummy
Thank you for the information on her. I'm trying to get in contact with her hopefully. I don't know what level I'm on but I've been eating this way for at least 8 months. It does suck eating this way cuz I miss so many foods. I will check out those books on Amazon and probably buy one or two. I already have many recipes but the more the merrier. Thank you again so much you have brightened my day
😊😊💜💜
Thank you again for her info I have recently ordered the cookbook from Amazon. I am always looking for new recipes with vegetables the stuff I really don't care for.
But what your missing are the things that make u feel like caca. It's so true. Sugar, bread... but the hardest thing is getting back on it after eating the poison (sugar) for me.
Highly recommend it, worked well for me!!!!
Its good to hear success stories so u know its not just made up fluff to try and scam money ya know?
Thank u for sharing!
Hi Mrkk Welcome to Our MSAA Community 😊. Was reading your posts, and sounds like you have been on this Roller Coaster Ride for awhile! For that I'm sorry, but I'm glad you found us!
Sorry about the spasticity, I can see that would be a problem. Hopefully they have given you some great ideas!😊 I know I got some!
Where are you from? I'm curious😁 How long have you been off your dmt?
Jes 🌠
I'm originally from Cleveland Ohio raised till I was 7 years old there. And then moved to Las Vegas Nevada where I lived most of my life. Now I live in Lake Havasu Arizona for the last 9 years. I have been off tecfidera for about eight months. I've had MRIs recently of my brain neck and entire back. There has been no progression of the disease. Well at least the lesions are the same as last MRI about two years ago. I truly believe that eating right is the way to go.
Welcome Mrkk . I hope you find this to be a great place to meet new friends, ask questions, and just vent when you need to. It sounds as though you have PPMS? 💕
Yes the doctor that I've seen thinks I have PP MS. She is at Ms specialist at barrows clinic in Phoenix. She wanted to put me on that new infusion drug but I told her if the MRIs show no new lesions at I do not want to get on it. So now I struggle to find new natural remedies and Foods. I will walk again I have faith and now enough support to get me there.
Mrkk , faith and hope keep us going, don't they? I hope and pray your MRIs and course of this disease remain stable, and that you are able to set your wheelchair aside and walk again. 💕Dawn
Keep a good and positive attitude no matter what treatment you want for yourself. I know stem cells are going to be what fixes MS permanently and they are moving ahead as much as they can on a cure. I have had MS for over 32 years,and have been on every MS drug on the market, and in May I did the new chemo OCREVUS which is supposed to be the wonder drug and besides Stem cells it is my last hope to remain mobile. Every neurologist I see cannot believe I am still walking because that part of my brain is damaged. It was scary for my wife and I to be told that someday I may go to sleep some night being able to walk, and the next morning I may wake up totally disabled again. The one treatment I found extremely effective for me was accupuncture. I received it from an intelligent doctor who decided to look into alternative medicine and I went to him during his newly acquired education in accupuncture. If this guy helped me out with just starting with accupuncture I can't imagine what someone who has been doing it all their life could do for me. The guy truly helped me not only with accupuncture but he purchased an new Calmare machine that only works on neuropathy pain which fixed.all my pain. Unfortunately the guy moved to another state and now I have to travel 200 miles to get either therapy.
I am a firm believer in the fact the body can heal itself, but everything I have read on the most effective stem cell so far includes hip stem cells and chemo. If you read the progress up in Canada they took 20 PPMS patients and did the stem cell chemo and 10 are MS free after 15 years. The only catch is some didn't live through the chemo portion of the therapy. Eating right and keeping a positive attitude would help anyone even if they didn't have a disease, but at times medicine may need to help keep us all on track. Those of us that have MS know this disease won't kill you unless you let it, but it will bust you ego down to where you have to have a positive attitude to fight through the life you were given.
Good luck and keep that great positive attitude you have.
I grew up with a mother who had MS, and she was so much stronger and bull headed then I am. When she came down with MS she was totally disabled and couldn't walk or see, and not knowing what she had in the 30's thinking she couldn't feel anything they pulled all of her teeth out. She told me she thinks she passed out during the second tooth pulled, and over the next year they used leaches and every other means to drain what they thought may be bothering her. She said one day she could first see and then everything came back, and she didn't have another attack until after I was born baby of six kids in my family. I always thought my dad was mean to my mom at times, but looking back he was always trying to keep her active as possible. She never drove when I was younger, but that is where I learned to always push myself and not accept the fact being disabled means you shouldn't be able to walk and enjoy life. I played rugby in college and I think the one thing that helped me the most was walking on stilts when I was young. I do not have any feeling from my thighs down and I lost feeling in my hands 30 years ago which the accupuncture brought back which it is gone again. My wife and kids have always been my motivation to keep going even though I was a jerk when I lived on steroids. Now I have grandgirls that gave me another lease on life, and that was tested when my oldest came down with MS.
We all were given one life to live and unfortunately we have MS. I can look around and always find someone who has is worse then myself, and when I start having self pity my wife always tells me something to try to cheer me up. I know even if they come out with a cure for me I doubt it will help because my brain and spine are completely damaged, and after the first Infusion of OCREVUS my brain felt like it was in a vise, but afterwards and looking back it was more like my brain was being pumped up and being forced into my skull. For the last five years because of all the damage new damage could not be seen, but I lost volume in my brain. I just hope and pray that the Ocrevus is making positive changes for me, and that it is correcting the damage.
At this point I would love to go one year without having MS before I die. I would love to just take a run and go hiking like I used too, but until the damage is fixed I know that I will not be happy every morning when I wake up, put both feet on the floor, and get up and walk. Every day I thank God for yet another day being mobile since I was unable to walk for way too long.
Keep up the fight and never give up no matter how bad things hurt or how much you can't feel. Remember the fun times in your life and make everyday wonderful no matter how hard it is. Don't let the MS win the battle and don't let it stop you from laughing and smiling. What helps if you can find humor in whatever happens since that takes away the MS control of your life. I am a little crazy but no matter what the MS to me I find way to keep doing whatever I want to do no matter how risky it may be. It is my own way of staying in control of my life, and I hate it when someone tells me "you can't do that" since I will go out of my way to prove them wrong.
Welcome Mrkk. You must be used to the heat in the southwest!! Not familiar with the alkaline diet? I do fairly well on a vegetable/fruit/nuts and grains. Can be hard but reminding me how I feel otherwise is a big help.
Alkaline diet is basically it all vegetables kind of like a vegetarian. Most foods are high in alkalinity. Not much acidic Foods. They say cancers can survive in an alkaline body. So I check my pH balance daily and drink a lot of alkaline water. I don't have cancer but at least I know I won't get it.
I'm confused. Cancers can or cannot survive in alkalinity?
Cancer can't survive in a alkaline body scientifically proven
Thanks 4 clearing it up 4 me🙂
I met a lady that has a tumor the size of a baseball. All she eats Are alkaline food. Within four months the tumor shrank half the size.
How do you use a photo for your profile name?
Mrkk go to profile page and it gives instructions. Where do you find alkaline water? Name of it? One nutrienal doc tested me and said I have an alkaline body, and I only drink spring water locally, but was wondering it you'd is expensive. SS makes for tight budget. Already on vegetarian diet except I include fish.
You can buy alkaline water at almost any grocery store. The best alkaline water I have tested is Essentia. You can get it online through Walmart or Amazon. You can also make alkaline water yourself with sea salt and spring water. There's a couple different ways to make alkaline water. I used to use Coral Calcium pills in my water. Now I just buy alkaline pH Booster drops for my water. If you have the money you can buy an alkaline water dispenser. Pretty expensive though over $1,000. Another way that I like is spring water with lemon cut up in quarters and put into the water. I do not squeeze the lemon just cut them in quarters and put them in the water. You have to drink it that day though or taste nasty
And if you want to eat alkaline foods there are charts online that show what's alkaline and what's acidic. Most of the foods that I like are acidic but I have forced myself to eat the alkaline foods. Now I love them I also have Bunches of recipe that are alkaline. I found a lot of recipes on this website called live energized. Com
I have a daughter who was dx'd with MS when she was 20. Only one in our family at the time ( until I was dx'd 3 yrs later.) She was on Avonex for about 10 yrs. Her neurologist ( in Ca) took her off her medication b/c according to him, he sees very little evidence that she has MS. The diagnosis was correct. She goes in for an MRI every 6 mos. She is a very positive individual and considers herself basically cured of MS. She said that one reason is Vit D from sunshine. She used to take the supplements but now spends at least 45 min. In the sun everyday. Eat a lot of vegetables and very little meat. I don't think all the answers are in and we know how differently MS patients can react. I agree from what I have read that vitamin D 3 is essential. And many of us not from a sunny state like California need D3 from food and supplements. Although I am still somewhat skeptical, I did hear a video given by an MS specialist Who says in some cases when a person receives medication very early in the disease process that they can pretty much do well as to basically be cured. He also said the someone can be symptom-free for many years 10 maybe 15 and suddenly worsen. I think there is still so much we do not know about MS. MRIs in general do not show all of the activity going in areas that do not show up in the usual MRIs that we have. Not seeing any lesions, or new lesions, or inactive lesions doesn't necessarily mean disease is gone. This is what makes me somewhat skeptical about my daughter's situation. What I also learned in this video was importance of measurement of brain shrinkage over time. I am not sure that this is being measured routinely. My neurologist feels that because I'm doing so well that there's no need for me to have an MRI ( which I have not had since diagnosis for 12 years ago) because he would not change my treatment which is 12 years on compaxone. Now that I have seen this interesting talk I am not convinced I totally agree with him especially since relying on whether one sees lesions or not or whether one have symptoms or not may not be the only indicators to know how well one is doing. I agree if copaxone is really working then an MRI would not change anything treatment wise but with no other MRIs having been done, there is no comparison as to volume measurement. Of course having brain shrinkage can he sign of aging as well as MS advancement.
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Got off the phone with Express Scripts/Accredo Pharmacy for my Tecfidera today
Which med???
