My lesions are shrinking - 3 year update

[tingletingle]

G'day Medhelpers,
Looking at the board today, most will not be familiar with me or my struggles but I thought I'd pop by and share some good news on my progress.

In May 2011, I received the dreaded dx and after researching started the Prof Jelinek program in September 2011 with the dream of overcoming MS by year five like so many others.

They say once you get one disease you're statistically more likely to get another and I complied with this research: last October I had a brain tumour 100% removed and unsurprisingly the headaches stopped.

I'm now celebrating three years of eating vegan plus seafood, meditating, and regularly exercising and have to say I feel dramatically improved. Some may say it's because of the brain tumour but certainly both the neuro and neuro surgeon do not attribute my newfound wellness to this.

On Friday I received some pretty amazing results from my latest MRI. To the astonishment of the medical profession not only was there no new lesions but the existing ones are shrinking! This phenomenom was first noticed seven months ago from a previous MRI but then last Friday there is now further evidence that the existing lesions have shrunk again. I'm not required to have another MRI for 12 months. Yippee.

I used to have 24/7  numbness and tingling from my chest to toes and down my left arm. I had MS hug, L'Hermittes sign, fatigue, cognitive issues, and would limp at least once a month.

Now I only have numbness and tingling from my knees to my toes. Some days it stays at just my feet but its still 24/7! All the other stuff is gone.

I know many people have tried diet and exercise without success and there are many people on this board feeling like crap. I feel for you because I have walked in your shoes.

I can't thank the members of this community enough who supported me through the trauma of diagnosis and the eight subsequent relapses in the first year. I truly owe you a debt of gratitude for helping me through the misery.

I promised that I would report back in five years as to whether the diet worked or not. From this latest medical report my doctors think that something good is happening to my health that they cannot explain. I stopped taking Copaxone after 18mths due to a suspected allergy and haven't been on any drugs since.

I feel extremely luckly and blessed. I also believe in the research that recovery is possible to which I now testify.

I wish you all the best of health.
Blessings
Alex

[LisaJF]

Are we all to stop our treatments and overcome MS and abide by Professor Jelink's or Dr. Terry Wahls books and do meditation, diet and exercise?  Is this the cure for MS?  

My boyfriend bought me the book of the "Wahls Protocol" and how she beat progressive MS using Paleo Principles and functional medicine.  I wonder if she was misdiagnosed.  These people do make money don't they if they sell their books? :)

I'm happy that you're doing so well, I really am and I do believe an overall healthy diet, exercise and taking care of your mind truly aids in your overall well being, but I too, am skeptical.

[michelleric]

Glad u r doing so well Alex! Keep up the good work,
Michelle

[HVAC]

Glad you are doing so well.

Alex

[tingletingle]

You're a very wise woman Ess and I love your open, enquiring mind.  This may be a bit indulgent but I thought I'd share my diary thoughts about the mind body journey from 16 mths ago. It's easy to believe the program works when you feel good but you need faith to trust in the research for the bad days and looking back I certainly had more than my far share of those.

ENJOYING TODAY May 2013
'Today I have enjoyed the most beautiful autumn day. The sky is a georgous deep blue colour with just a wisp of thin white cloud to frame it. The temperature is a slightly cool 18 degrees in the shade but feels more like 22 when lying in a sheltered position in the sun.

I walked to my secluded meditation spot today with a skip in my step at the combination of beautiful external conditions, listening to classical music, and the realisation that I feel at peace with things. My MS symptoms feel very light today which is a bonus. I hope this time I will finally wake up to myself and stop worrying every time my symptoms change - which can be daily, and hourly.

I was going to be 100% cured by crikey when I first started the program. I was going to be a success! Well, as I have discovered I am already a success and it doesn't matter that at times I may feel a bit tired, or my neck twinges with electricity, or my legs feel like lead etc These funny sensations do not mean the program is not working, they only serve to confirm that I do indeed have MS but as long as I choose the OMS then I need not worry about the future.

Overcoming MS starts in the mind. I don't know how many times I have wept at some failing body part not performing the way it used to and then I start imagining a rapid descent into a miserable future. Of course I end up feeling worse for dwelling on this than the actual symptom. So I am learning that my despair is not only unhelpful but also inaccurate given my circumstances.

Now my male MS friend, who is in an electric wheelchair, in supported accommodation I imagined would be in despair at his condition. But to my surprise he is not. As he says 'I just accept it and make the most of what I can do. What choice do I have.' Each time I visit I come away with a tear in my eye at his strength. So putting my situation in perspective is easy - I'm so far away from despair it isn't funny.

Seeing a positive outcome for our health is hardest when these little MS hiccups strike. I do believe the the trick to cope is seeing the bigger picture. Until I reach that magic five year mark it is impossible to say whether for me the OMS categorically works or not so I have found that I need to continually remined myself of the overwhelming proof of my living breathing MS colleagues for whom good health has been documented in studies. Yes, I believe that I haven't progressed after 20 months. Yes, some symptoms have gone, and yes, I have MS and still feel crappy at times. We are overcoming MS, no one is saying cure and that's important in terms of expectations. I truly hope and pray that all my symptoms eventually disappear like the symptoms of so many other people's, but if it doesn't happen then so be it. I am so lucky that I have found a natural program without side effects. It gives me enormous comfort knowing that I will be okay as long as I continue to follow it. The odd bad day or period happens to the rest of the population anyway.

Meditation has helped me form a much better picture of myself. Counselling has also helped. Overcoming MS for me has shifted down a gear to take on a much slower pace recognising that I need to simply relax and enjoy the beauty of the here and now. During the down days, in the absence of wellness, I choose to simply have faith that the evidence points to tomorrow being better and push on regardless.'

And today Sept 2014, the pushing is over. I still have MS it's just I feel sick or suffer like I used to. I'll still come back in five years as promised to offer my final verdict at which time I'm hopeful that even my sensory symptoms will have departed also.

Blessings
Alex

[essdipity]

Thanks, Alex, for this explanation. You're right, I'm a very analytical person by nature. That helped me qualify for my job in information tech at a heavily research-oriented university, and being surrounded by all those brainiac professors and scientific researchers sealed the deal, I guess.

I'm also a great believer in the mind-body connection, because it's, well, logical. Our eyes see something incredibly ghastly, our brains interpret what that is, and our stomachs revolt. Or, to use a much less gruesome example, we read a scary story and get goose bumps. And on and on. So we have clear evidence of this every day.

I also believe that our pasts and our memories are affecting what goes on with us both mentally and physically in the present. The human brain is a wondrous thing, making connections, understanding ironies, restoring the words of a song or the smell of the middle-school hallway, all at lightning speed. I don't believe any artificial intelligence invention, no matter how sophisticated, will ever begin to approach the capacity of our brains, in many areas.

The brain understands the body very well, but in ways we are not conscious of, and perhaps that part evolved because to be aware of everything in our bodies might be overwhelming. In any case, body and brain are part and parcel of the same thing. It has been demonstrated, for instance, that mood disorders, which are mental illnesses, result from imbalances in brain chemistry. That's why anti-depressants are effective for so many--they restore the proper balance.

Well, I'm wandering off-topic here, but on purpose, because I wanted to reiterate how firmly I am in the camp of the mind-body connection. It does seem reasonable that there's an element of this interaction in MS. The question is what, and how. I wish Dr. Jelinek had followed up on all 109 patients further than five years, and had reported all outcomes. It's great that he has written about 12 success stories, but I want to know about the others too.

It's true and I have often commented that MS and other health-related internet boards are generally frequented by the frustrated and/or exasperated. That's how I got to MH  :-)  There are many exceptions, of course, but I think it's only human nature that when things are straightforward and the patient's relationship with the medical community is going well, there is much less need to seek web interaction. But Dr. J no doubt could locate and report on a great many more of the original cohort than he has done, and I wish he would..

Nonetheless, while remaining a skeptic about his work, I have found his book on Amazon and will be ordering it. Should be a good read. I'll try to keep an open mind.

Thank you, Alex.
ess

[tingletingle]

Hey Ess,
Thanks for your warm comments. Glad to see a familiar name on the boards. It has been a wild ride the last few years and but I think my faith, family, and supports systems like the gang here really helped me get through.

It’s funny Ess, I think we may both be analytical people – I can’t believe unless I see the data or experience it myself either. I know faith is a separate topic but no one was more surprised to find that God was real on a golf course of all places than me. Anyway, back in 2011 it took me three times to see the lifestyle change for treating MS as being worthwhile over some pretty wacky alternatives.

When I finally came across Prof Jelinek’s book I read it in a night! It is an ‘evidenced based guide’ which is why I couldn’t put it down. He is a medical professor specialising in research who was diagnosed at the same age as me. He really stirred things up by taking a new look at the research including why Swank and the 144 patients studied over 34 years was proved invalid.

Prof J then conducted his own research following 109 patients over five years and found a 22% improvement which has never been shown in any studies before. Then, people like me said to him so where are all these so called well people. He responded by publishing a collection of stories of 12 patients who had recovered and explained that people who have overcome the disease don’t frequent the boards anymore as they don’t need to anymore. I have discovered this to be true from personal experience.

I know of several people who started around the same time as me on the boards who now report similar recovery.  Yes, it has my doctor rather intrigued now the ‘evidence’ of a real person is before him.

Tonight Prof Jelinek is having his world-wide movie premiere that details the mind-body connection as a path to wellness. For me, meditation, counselling have been equally important as the diet and exercise. You see I discovered that I have been holding on to all sorts of painful things in my past. I discovered why I was dis-eased.

Ess, it is so hard to believe in anything when there are so many charlatans and snake oil salesman out there. Prof J is definitely not in this for the money with his offer of free books to anyone newly diagnosed over here. I’ve met him and can’t speak more highly of him.

So, the hard thing about the program is staying the course for the three to five years. Wellness happens gradually, kind of like two steps forward, one step back. It makes no sense to most people – doctors, MS Society, most MS patients- but then the science proves it so in the absence of wellness so you just gotta have a little faith.

Blessings
Alex