I know there is a valiant effort made by everyone here to support each person’s right to make their own medical decisions. I really like that. I also notice that most people here advocate following a medical doctor’s advice, which is almost always taking DMTs (Disease Modifying Therapies aka pharmaceuticals).
I also understand it’s extremely risky to advocate any treatments for MS that are not supported by the MS Society, peer-reviewed studies, and double-blind trials.
THAT BEING SAID... Is anyone here brave enough to admit “going freestyle”?? Otherwise known as “going cold turkey”? How did it turn out??
I wanted to share my own personal experience: specifically, discontinuing the use of the injectable DMT Copaxone, starting a Terry Wahls / Robert Atkins type diet, and adopting an Eckhart Tolle type mindset. (If this sounds dangerous, please don’t read this post!) 😅
I stopped Copaxone for financial and ethical reasons, but also because I got to a point where my life was absolutely OVERTAKEN by “being an MS patient”. ...I was sick of it. Between the doctor appointments, exams, scans, tests, support group meetings, pain management visits, counseling sessions, physical therapy, insurance issues, health savings account reimbursements, disability forms, and prescription refills... my entire day, my entire week, my entire IDENTITY was tied to “being a victim of MS”.
I wasn’t even feeling better than before I was diagnosed and treated. In fact, I felt worse. I was going steadily downhill. Every measure of progression (gait, brain function, muscle strength, memory, vision, ability to sleep) was advancing further.
I began to contemplate suicide. I did not want to wait to hit rock bottom. I did not want my husband and my kids to have to deal with that extreme level of disability. I did not want them to remember me as a broken, ill, exhausted, depressed person. I started thinking about how to end my life.
But then I reasoned that, if I am willing to go so far as ending my life... then, why am I not willing to try other therapies? Wouldn’t that be, umm, kind of logical to do before giving up entirely?? And if I was resolved to die, then why not just get it over with? Why take my meds and prolong my time on earth?
So, I decided to “go back to the drawing board”. Start over with a clean slate.
I quit everything. Cold turkey.
I stopped seeing my neurologist, psychiatrist, urologist, ophthalmologist, therapist... Whatever specialist you can name, I ghosted them! I stopped my 13 daily prescription drugs. This was seen as an idiot move by everyone who cared about me.
But... I also stopped identifying myself as a “sufferer of MS”, a “victim of MS”, a “fighter of MS”. Instead I started thinking of myself as “a person living with MS”.
This meant accepting my limitations, without being angry about it. Always taking it easy. Never straining myself physically. Being kind to myself mentally. Limiting stress to near zero. Saying no to most social engagements. Refusing to make promises my body couldn’t keep. Giving up things I used to do without being sad about it. Getting tons of rest. Getting plenty of sleep. Then even more sleep. Hydrating. Relaxing. Meditating. Recreating. Finding joy. Losing weight. Doing only the things that make me happy, and letting all the rest go.
Sounds pretty useless and ineffective and “granola crunchy”, right? It’s that kind of garbage advice I used to get really angry about. Like, “You should just sleep more,” or “You’d feel better if you just take walks in the sunshine,” or “You should just rest.” I used to really frown and growl at those kind of remarks! “YOU JERK! THOSE THINGS CAN’T CURE MS!” I would scream inside my head.
I was right. They CAN’T cure MS. But then again, nothing can. And so obviously, neither did the criminally expensive prescription drugs I was swallowing and injecting several times per day. At great expense to my family.
So given the choice between dying of MS, and living with MS, I chose the latter.
I don’t take any drugs for MS. I do take vitamins, supplements, probiotics, and digestive enzymes. I eat an anti-inflammatory, low glycemic index, low carb, high fiber, mainly plant-based diet. I avoid gluten, sugar, liquid dairy, and meat. I practice intermittent fasting. It’s a lot of work, and not a lot of fun.
I feel sooooo much better than I did when I was “actively battling MS”! I see better, walk better, think better... and I no longer want to die.
Although I could never suggest this as a protocol for anyone else, and certainly NEVER as a substitute for “following the advice of your medical professional”, I can at least share my personal experience.
Has anyone else tried something their loved ones and friends were adamantly against? What happened? I would love to hear about your experience.
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HensTooth
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If you are feeling great & doing great Then more power to you & tell the others to"kiss a duck" that is my motto. Lt doesn't matter what others think or say it's your body you live with it not them. love ya falalalalal
I’ve praised ketones and fasting several times for fixing a lot of my MS issues, but I don’t recommend it because it’s annoying when people half try something and then claim it doesn’t work.I guess I don’t mind what anyone thinks, but my improvements from taking my DMT and my diet are very noticeable to my family. I also got to get rid of a lot of meds 🎉
Yes! Me too! I like keto, it really works if you can be honest with yourself and stick to it! A friend told me she tried it but it didn’t work. I asked her how long she lasted and she said “3 days”. LOL! Not even in ketosis at that point... But I’ve got a “blower” for metering my level of ketosis which helps a lot.
3 days 🤣🤣🤣 It’s painful for some of us to realize this could have prevented years of misery, medications or even surgery...if only we knew it was an option! I use a blood meter and check glucose at the same time. I know I need to wake up higher than 2 if I’m having a relapse to be able to get through the day, and that’s very empowering! I wish I had known a decade ago, but like your friend, I tried it way back when, did it wrong, and it didn’t work 🤷♀️🤣🤦♀️
I followed the identical path on which you find yourself. In 2016, I decided “No more”. I felt exactly as you described. I realize that this decision is not popular among some forum members. I respect all opinions, but for me, this has been the best path. I am simply a person living with MS. I am doing pretty darn good. I hope we can stay in touch. I’m not sure of your age bracket, I am 60 years old, but I have found age to be very irrelevant in life and friendships. Look forward to hearing of your forward journey. Kelly
I don’t mind putting my hand up. I will be 65 soon, I have PPMS, I was dx in 2010, I live in the U.K., under the NHS. When I was first dx, I was told that I had had ms for at least 25 years, so 10 years on , I can still walk with a Walker. I use an off road disability scooter to get around the farm and walk my dog, Razor. I was told that there was no treatment for PPMS, so make the best of each day, and take life a day at a time. I was offered Ocrevus when it became available, but I have a strong cancer rate in my immediate family, so I refused. I don’t take any medication for ms, for Restless leg, I do. I think everyone has to do what they think is the best way to handle ms for them. They should take advice, but follow their path. This is not a judgemental illness, we all have to do what’s best for us. I have just had 4 wonderful days with my grandsons, home schooling, very tiring, but I feel blessed to have had that time with them, to be able to encourage learning and see the smiles on their faces when the penny clicks. I thank God that I am still able to be of use in some small way. I wish you every blessing as you go forward with your life with ms, just enjoy every day, blessings Jimeka 🤗
Thank you, HensTooth for this refreshing and and very personal post! Our 'ms' journey is unique to each and every one of us. We all have family and doctors to assist us, but it is our choice to do the best for us after all. Keep Smiling
I was diagnosed in 1996 with ms and lung 🫁 cancer ♋️ at same time. MS treatment was put on hold for probably six months. Then I got a great neurologist that specializes in ms. She started me on Copaxone and have been on seven different DMT’s thru this time and truly believe they were a great success in keeping ms under control. The last two years my neurologist in Meridian Idaho and the one in Pocatello Idaho have been talking and suggested about going off meds where I have been stable for so long. Been on them over 25 years and over 65. They advised totally my decision and would happily keep me on Aubiago or whatever I chose to take or do. February of this year I decided to go off ms medication even with the fear of exacerbation. I had two months of meds on hand just in case and kept prescription active so I would not have to go thru approval again. Been a year now and things are going well and still have the complications of ms. I had new baseline mri’s of brain 🧠, cervial, and spine done in December. Both spine and cervical lesions are gone with no trace ? Brain 🧠 went from 19 to 9 ? Yes I have changed my diet through the years and vitamins I take. Also I was diagnosed 5 years ago with stage four throat cancer ♋️. I went thru surgery, radiation, and heavy doses of chemotherapy. Maybe this has something to do with lesions? Both neurologist have really no idea 🤷🏼♂️ of what has happened and both have 27 years plus in specialized ms treatment. One has written a couple books 📚. First time either of them have seen lesions disappear. Maybe it’s the Lord thru prayer 🙏. So anyway I truly believe that thru the years it was a blessing to have been on the ms medications and I still am seeing neurologist every six months for follow up which I think 🤔 is very important. Good luck to everyone and blessing to all. 🙏👍😊☺️ Ken 🐾🐾🐾🐾
Copaxone was the first DMD I was on I was on it for 2 years then I got progressively worse with the MS so I was then taking Copaxone and avonex combined. That combination did not work out for me I then proceeded on to three different dmds before I finally started with ocrevus 4 years ago and my only regret with ocrevus is that it wasn't around 20 years ago. Best of luck to you and the future.
I haven't stopped any of my meds. People should be respected for their own decisions. But I remember a couple times someone pushing No meds and a diet plan. Nobody should push anyone into anything. We all have chosen our paths and unless asked, nobody should be pushing people into what works for them.
Absolutely right! I agree completely. I can get along with anyone until they start trying to ram their theories down my throat! Our body belongs to us, and we must be free to make our own decisions.
Thanks for sharing your experience, HensTooth. I think that's what I like about being here (besides the humor!) is hearing different perspectives of dealing with MS. We don't all do it the same way, but we can all support each other on this journey of living with MS.
I have cerebellum ataxia cause unknown. There is no cure and some of the medicine my neurologist wanted to prescribe me were a crapshoot. I decided right there I wasn’t going to be their lab rat. I see a pain specialist, chiropractor and massage therapist. I haven’t been to PT or had a massage in about three months, thank you COVID. 🙄 I don’t have to deal with any side effects because I don’t take the menu of medication. I don’t have endless doctor appointments because I only see my pain specialist every four months. I’m sorry about your diagnosis but I completely understand why you’re following your decision. I’m basically doing the same. There isn’t a cure. They don’t even know why I have ataxia. Everything is negative. Why would I arrange transportation? Take questionable medications? None of it made sense to me and if there wasn’t a pandemic I would go out if I felt good enough to enjoy myself. If I didn’t feel good, I would stay home. Zero guilt. Admittedly I am bored since my medical “retirement “ but I just couldn’t do it anymore. I still miss it but then I go take a nap. You do you. No apologies. Take care
I believe in a combined approach rather than pharmaceutical vs non pharmaceutical. If my MS continued to progress at the pace it was before Ocrevus I am sure I would be disabled now.
But I also believe in keeping your overall health at it's best through diet and exercise.
My physical therapist was a godsend and only had to see her twice. She did 2 things that greatly improved my life. She performed the Epley maneuver which took care of the benign positional vertigo I was having and the Gabapentin I take just at bedtime prevents the MS vertigo about 95% of the time and when it does happen it only lasts a couple seconds. She also sent me to an orthotics guy for an AFO brace which I love and will allow me to work much longer than if I didn't have it.
I started intermittent fasting in December and have less fatigue. I am going to get back to Atkins on Monday. I have done it many times and don't have too much trouble following as I don't have much of a sweet tooth. Just have to give up bread (which I rarely eat anyway) and pasta & wine/beer (these are a little harder). I always feel better when I am on it though. I love the Atkins website and the recipes there.
My previous neuro spoke at an MS update seminar and showed slides on an MS topographical model that made a lot of sense. It describes MS symptoms through a swimming pool filled with water. The water level indicates your overall health which is influenced by lifestyle such as diet and exercise as well as other medical problems. The shallow end represents areas where demyelination would not have a buffer to compensate such as the spinal cord and the deep end has a buffer such as the brain and the middle I think was cerebellum and the optic nerve which have less buffer than the rest of the brain.
It then showed spikes come up from the bottom of the pool that represent new lesions forming. If the spike breaks through the water level then you have symptoms. For RRMS these spikes will often break through but then lower down below water level but are still there. If your water level (general health) gets lowers then symptoms from these spikes become noticeable again.
This model demonstrates the importance of doing everything you can for your general health and not relying on pharmaceuticals alone.
I guess I have never looked at it as fighting MS but rather doing what I can to slow it down and continue to live the best life I can. My goals in life have changed very little. The main difference is how long I will be able work which influences money available for the other goals. Luckily my husband and I never had high end goals and enjoy the simple things. I do want to start travelling to places that require more mobility next year since we never know how long our mobility will last.
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