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1734735 tn?1413778071

Update after almost five years since diagnosis

G’day gang,
It has been far too long since my last confession but thought I’d stop by and offer some encouragement from my recent journey and share the latest medical results.

I’m coming up to my five year anniversary of developing MS next month and I’ve been too busy to be sick. Last year we were blessed to be in a position to build a lovely new home in regional Victoria, Australia which is a huge change to the damp old houses we used to occupy when we lived 600 km away in Sydney. My wife, three kids and I moved in just before Christmas. With help from a few contractors, I worked solidly doing the landscaping all holidays and then weekends when I went back to work.

Talk about back breaking work, I think I hauled about 200 heavy wheel barrow loads of various materials around the property including road base, pebbles, soil, and bark chip. I installed a water system and much, much more without experiencing killer fatigue, shakes, tremors, or funny electrical sensations like I regularly used to. When I think back to my health just 2.5 years ago I wouldn’t have believed I had any chance of doing this.

The landscaping was all finished in time for my 50th birthday which I celebrated by throwing a huge party. This was yet another huge amount of work in itself but luckily I had some family helpers and there was an open bar to ease the pain. (I may have had slightly more than my quota of two drinks that day, but I did ask for forgiveness that night)

For my birthday I got a new three wheel golf buggy which I tested out only a couple of weeks ago walking about 3 km over nine holes of golf. It was a beautiful morning and there was no hint of the terrible heavy legs and limping that used to plague me in the past. For my next adventure in May, I’m planning to drive the 22 seat school bus and assist the teacher in supervising the kids on their four day class camp to Sovereign Hill in Ballarat, Victoria. I was dobbed in by my 10 year old son to do this as he knows I have a Heavy Vehicle Licence. Little did I realise that before I could undertake this ‘volunteer’ duty I would need to complete a shed load of paperwork and obtain multiple approvals from various government agencies including…..a medical report, even though my last one completed for the purpose of keeping my driver licence was done so less than seven month’s ago.

I firmly believe in the blessing that comes from these trials. I also believe the Overcoming Multiple Sclerosis Program by Prof J is a blessing in itself and I can say hand-on-heart from the resolution of personal symptoms that it works. The blessing of having to obtain a medical to obtain my licence to drive the school bus in this instance came in the form of further independent medical proof that the program works.

This morning I saw my old arrogant neurologist. We’d had quite a combative relationship in the early days with me challenging his strong professional judgement and recommendations to take Tysabri ‘we need to hit the MS hard with everything we’ve got’. I told him about Professor Jelinek’s program and that I would only take Copaxone. He was unimpressed with OMS and seemed to lump it into all the other programs labelled quackery, but grudgingly he respected my wishes regarding choice of drugs. He knows I continue to follow Prof J’s program but we don’t talk about it in detail anymore, just in passing comments. He is certainly curious about it and my progress because I know he talks to my GP who talks to me. Actually my GP is great. He refers MS patients to me to discuss the program.

So, we went through the medical exam required to obtain the licence: eye test – perfect; blood pressure - 60/120 ‘hey you’ve got better blood pressure than I do’ he said. Then he asked ‘drugs?’ I said, quick as a flash, flaxseed oil. He instantly stopped and looked up for a moment and then returned back to his work and wrote a big cross under no. Finally, he retrieved the latest MRI report from my file and read it. He seemed to get even more serious as he handed me the document and said in quite a solemn voice that the final lesion in my brain had resolved and that no new lesions were apparent. For a minute I was confused by his tone. I expected bad news. I looked at his dull face and then read the bright words on the page and then realised that this was good news! Yes, I only ever had two lesions in my brain and this was the second one to magically resolve after the first one did the same two MRIs ago. Not content to have the sounds of patient merriment spilling out into the glum waiting room, the good doctor tried his best to burst my joy bubble by saying ominously ‘but, we don’t know what is happening in your spine’. Ah, he thought he had me.

A few years ago I had asked him for an MRI referral to do the full brain and spine as it had been three years but he declined on the grounds it was unnecessary medically and too costly. So, I promptly went to another specialist and got one done in August 2014 and copied him in. So, continuing on with the story, I replied yes we do know what is going on in the spine as I have had a full MRI in the last two years. He grabbed my file with intent and looked hard. There it was in black and white! He summarised ‘it looks like those lesions are shrinking too’, the colour just seemed to drain from his face (tee-hee-hee).

Now I’m sure that my characterization of his reactions may have been a bit exaggerated for entertainment and prejudiced by our previous encounters over OMS. As sure as he is signed up to abide by the Hippocratic Oath I'm sure he would have been happy for my good health. So,at the end our 12 minutes together for $280 he says ‘actually, you would be my healthiest patient’. ‘Yippee’, said the recalcitrant MS patient!!

I’m looking forward to doing an eight hour walk to climb Mt Feathertop on 17 September this year and even have  the OMS T-Shirt to wear. If anyone is in the area and feeling fit you’re more than welcome to join me. I still want to organise a wellness event dinner in Melbourne for the following weekend but will see how I go.

Blessings
Alex
5 Responses
987762 tn?1331027953
COMMUNITY LEADER
HEY YOU!!!!

Great, wonderful, fantastic News babe! Sorry i've not got a lot of time to replay today but i really really want to chat.....i'll definitely get back to you tonight!

Hugs.....JJ
987762 tn?1331027953
COMMUNITY LEADER
Hey babe :D I got to tell you, it was so so nice to see your atar picture turn up on our boards again, i don't see many oldies lol but goodies these days, so thank you for coming back and letting us know what has been happening to you!

WOW what an update :D I remember you mentioning after the brain surgery that you were getting into one of the MS diets, couldn't recall which but it actually sounds like the MS program by Prof J has really been doing you the world of good, yeeeeeha babe

Although i'm an advocate of diet and the beneficial overall well being and neurological aspects, because of our unusual or rather weird family history with diets, medication etc, lol don't hate me but i'm still a sceptic that changing to any specific dietary related program is going to eventually become the cure for MS, even with our family history i personally need a lot more scientific research behind them before i'd be comfortable with the validity of what the dietary programs are generally claiming...

"Different diets have been proposed as treatments, or even cures, for the signs and symptoms of MS. Most of the diets touted as helping people with MS have not been subjected to rigorous, controlled studies, and the few that have been evaluated have produced mixed results.

Most claims made for dietary treatments are based on personal accounts, and reported benefits may be changes that could have happened without any treatment....

...There is some evidence that a diet low in saturated fats and supplemented by Omega-3 (from fatty fishes, cod-liver oil, or flaxseed oil) and Omega-6 (fatty acids from sunflower or safflower seed oil and possibly evening primrose oil) may have some benefit for people with MS.

A recent research review paper by Pavan Bhargava, MD, provides information and current evidence for each of the most popular diets.
Some special diets may be harmful because they include potentially toxic amounts of certain vitamins, or exclude important nutrients. That's why it's important to consult with your healthcare professional before starting any diet that includes nutritional supplements or vitamins."
http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Diet-Nutrition

The association of diet with quality of life, disability, and relapse rate in an international sample of people with multiple sclerosis. (2015)
Hadgkiss EJ, Jelinek GA, Weiland TJ, Pereira NG, Marck CH, van der Meer DM.

"RESULTS:
Of 2469 participants with confirmed MS, 2087 (84.5%) provided complete data on their dietary habits (DHQ total score). Multivariate regression models demonstrated that every 10-point increase on the DHQ total score was associated with nearly a six-point and five-point increase in physical and mental HRQOL, respectively, and 30.0% reduced likelihood of a higher level of disability.

After controlling for age and gender, and the other dietary covariates, 'healthy' consumption of fruit and vegetables and dietary fat predicted better quality of life and less likelihood of higher disability when compared to respondents with a 'poor' diet. For those with relapsing-remitting MS, the DHQ total significantly predicted a lower relapse rate and reduced odds of increasing disease activity, but the model fit was poor and the predicted change only marginal.

DISCUSSION:
This study supports significant associations of healthy dietary habits with better physical and mental HRQOL and a lower level of disability. Further research is urgently required to explore these associations including randomized controlled trials of dietary modification for people with MS."
http://www.ncbi.nlm.nih.gov/pubmed/24628020

At the end of the day, i think your update is wonderful :D please don't be a stranger, we still have a few great peeps holding down the fort but we seem to have misplaced an awful lot of our MSers, so please consider sticking your head in once in awhile :D

Cheers......JJ

1 Comments
The whole diet thing and MS is really fascinating.  On another MS board there was a post about the consumption of gluten in susceptible people producing inflammatory markers linked to starting off MS so who knows.  

I've been really great since I changed my diet too, but I've also made peace with where I'm at health-wise so who knows whether it's the diet or reduction in stress that is responsible for me feeling great.  Long may it last !!
667078 tn?1316000935
I am glad you are doing so well.

Alex
1734735 tn?1413778071
Hey JJ, how the heck are you? And thank you dear Alex (HVAC) for your good wishes- you’ve had the most unbelievable battle and handling it all with good grace and humour.

I started on the Overcoming Multiple Sclerosis diet way back Sept 2011 despite you good people cautioning me against any miracle cures. Yes, there are a lot of charlatans our there to take the money of those people who are desperate to find health. But the author of the program was someone I found to be of substance and whom impressed me when I met him personally. He even wrote, published, and gave a way his book to people in Australia and New Zealand at his own cost!

The Medhelp community, of which you, Alex, Shelly, Lulu, Ess and so many more good people were part of back then, really helped me come to terms with MS. It is a horrible, frightening disease that when it has you in its powerful jaws brings you to your knees and makes want to give up. But lucky for me I had Jesus alongside me to pull me through as I followed the admittedly very restrictive program of diet, exercise, and meditation and it proved to be the natural tonic my mind, body and soul needed.

The OMS program taught me how to get my life back in balance. But to repair a lifetime of damage and change bad habits takes time.

In the movie Groundhog Day Bill Murray plays the most superficial person engaged in the most boring job. One drab morning he wakes up to the radio blaring Sonny and Cher’s "I’ve got you babe". He plods through the day, encountering a group of wearisome people along the way.

The next morning the radio wakes him again with the same song – Sonny and Cher all over again - and then he comes across the same boring people and the same boring events that he had the day before. After reliving the same day for about 3 weeks he realises he is in hell and tries to stop it all by taking his own life only to wake up the next morning to the same song and the same day.

He tries to find some kind of meaning amid the boring repetition of each day. First he turns to a life of crime and then realising that this isn’t working he launches into a routine of self-improvement. Through music, poetry and love he transforms himself into a likeable person and in the process, he comes to see the people around him in a different way. He turns his life around; he takes charge of his life and changes himself into someone worth loving and uses his time to make life worth living. Only then is freed from the cycle of the eternal rerun. The movie’s message is simple – if you want to change your life to one that is meaningful and full of purpose then it’s all up to you.

With MS you feel crappy and it is very hard to change if you think ‘what’s the point’. But I embarked on the program despite opposition from family, friends, doctors and MS patients. For me the evidence was simply too compelling.

JJ you’ve accurately identified the latest and most compelling study of MS patients that supports the work of Professor Jelinek and his three pronged approach of diet, exercise, and meditation. His previous study consisting of patients adopting his program was much smaller but with equally fabulous results. Obviously it is not a cure, it just allows you to live your life without MS having you in its grip.

When my neuro gave me the news that the second lesion in my brain had resolved I asked him if he would be prepared to write me a letter to say I didn’t have MS. I was really hoping he would as my insurance company recently declined my application to increase my cover. But, he said ‘no, you’re just lucky you’ve got a very mild case of MS’. I just laughed and reminded him about the first 12 months after diagnosis and the constant relapses. Yes, I had a meningioma but that's a completely separate disease and doctors don't rate it as disabling or life-threatening at all.

Anyway, I think I’ve rabbited on for far too long. I promise this is my final update on the OMS which I committed to do way back in 2011. Obviously its up to individuals to make up their own minds about the program and what effect, if any, that its had on my disease course. Nearly five years wow, it seems like 20 years ago given all that has happened.
Wishing you all love, hope, and joy.
Blessings
Alex
987762 tn?1331027953
COMMUNITY LEADER
ROFL i'm in the middle of trying to save our financial bacon and currently keeping my fingers crossed whilst i'm climbing ladders, ripping down plaster, using tools that get heavier the more I use them, lol trying to get the paint on the window trims and not every other surface despite using a truck load of masking tape and I'm constantly driving my husband mental when I come up with a different idea to yesterdays :D

More than my usual share of hilarious moments, learning how to save a $ and the benefits of accepting near enough really is good enough......where there's a will there's usually a way babe, so i'm wearing my big big girl panties and just scuking it up and doing what needs doing lol

I kid you not but i've had way too many conversations with various types of dr's over the years, explaining my son's unusual reactions to food and medications (dairy, chemicals, additives, colours, flavours and preservatives) goes against all the rules lol unless they see it happening in front of their own eyes, it just can't be right......give this kid a simple vanilla ice cream cone and you'll see someone obviously neurologically compromised lol a fall down, nonsensical, slurring, giggling, welting itchy mess who you'd swear is as drunk as a skunk......for so many reasons and with the huge additional belief in brain plasticity thrown into the entire wellness kit and caboodle, i get it, i truly do..

BUT lol isn't there always, i can't get past that underneath all that can definitely make things 'worse or bring things back' to the forefront, no matter what, there is still the underlying core issue and in MS that's an abnormal central nervous system.....and what you've experienced isn't impossible or even all that unusual if you look at the history of MS.

What are basically accepted facts for RRMS:

Lesions come and lesions go, there are studies of stable MSers (no clinical signs of relapsing during yr long study), who've had monthly MRI's and from one MRI to the next their brains are showing that despite not experiencing a relapse or progression or how good they've felt, their MS lesion activity is not actually ever stable, lesions (new or old) are still constantly active behind the scenes, new or old lesions can lighting up, become stable and or disappear.

No one has ever been able to accurately predict an individuals time period between (symptoms returning, experiencing something new etc) relapses, (month, year, decades) nothing is really outside the norm with RRMS, relapsing within a month of the last is generally considered to be the same relapse and not a second but the time between could literally be anything.

No one can accurately predict if any of the DMD's are going to reduce or slow down an individuals relapse rate, but there is a lot of corroborating research since the introduction of DMD's that they have changed MS history and the previous norms for MSers across the globe are more promisingly good.

No one can even accurately predict if or when an RRMSer is going to transfer to SPMS, it's expected that 50% will develop SPMS in 10 years and 90% within 20 years but the time period of transition can actually last years, and debate over how long MS was present prior to official dx of MS.

The first 12-24 months after official dx is generally thought to be the hardest on an MSer,  more than physically there's undoubtedly a lot to go through emotionally. How long it takes for someone to accept and understand what their MS means for them, its as individual as MS is, with too many varying  factors involved eg personality, physical activity levels, life style, family, financial, insurance etc etc etc.      

That research is understandably promising from your perspective, it is to a degree but it's not compelling corroborating research for diet as a MS cure per say, if anything its only corroborating that a healthier diet and life style is better than a poor one, regardless of MS we basically already know that to be factual....

" 'healthy' consumption of fruit and vegetables and dietary fat predicted better quality of life" and its barely touching on it's impact on relapse rates...."less likelihood of higher disability when compared to respondents with a 'poor' diet."

What stands out in regards to relapse rate is the "less likelihood of higher disability" which is already something they can't predict and even "after controlling for age and gender, and the other dietary covariates" they still accepted "the model fit was poor and the predicted change only marginal" which isn't a resounding endorsement of a dietary cure by anyone's standards, the research just isn't proving the theology behind it, yet?!      

I love bouncing around these thoughts again, i've definitely missed this :D so thanks for waking up my little pea brain, it's been awhile lol what with the hammering, ouch, hammering, ouch that i've been doing instead, i am so not built for this renovating game lol

HUGS.........JJ  
  
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