rachaellouise 06/01/18
Last reply 6 months ago
How have all these people got better?

How of all these people got better with ms ?

If you can’t cure it and it’s progressive how have they gone into remission ? They can’t have all been misdiagnosed or been ‘mild’ or benign ms . And not all on drugs .
Stats say by 10-15 years go in from RRMS to Primary progressive . Some had been progressive and got out of the wheelchair . How do you explain that?

Rachael.x

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


vixen
6 months ago

Hello @rachaelloiuse, sometimes looking at the stats isn’t so helpful, given the individual pathway for each person. For example, at a recent appointment with my neuro, the person before me went practically skipping into the room at the age of 79. She has had a diagnosis spanning 40 years, way before the invention of any DMD. Yes it’s progressive, but when you think about it, so is life for everyone! Another example; I feel 100 pc better than this time last year following my first relapse. This has been achieved through regular small exercise, diet and working on my emotional agility. There are some claims that people have gotten out of a wheelchair. Hopefully, we we will be hearing more and more examples of improved fortunes as the medications improved. Although Ocrevus, the first ever ever DMD for PP and RRMS is thought to slow progression, I have been reading accounts of people overseas feeling some improvements too. I guarantee there will follow an enormous surge of activity around developing drugs like this because the major drum companies will compete against each other in the cut throat world of the Pharmaceuticals. You, me and all the other Warriors here must continue to be realistic, but also remember that hope springs eternal xx


vixen
6 months ago

Sorry, I meant drug companies, not drum companies! That would be funny, bang band bang!


rachaellouise
6 months ago

@vixen – I understand but how have they gotten out of the wheelchair when not on drugs ? How can this be explained ?
Rachael


mermaidia11
6 months ago

Yea but the reality is actually that – they aren’t statistics, it’s the way the illness behaves and that has always been the case
Around 15 years after diagnosis, rr turns progressive.
Unless your in the 10-20% whose dmd work

I have had ms for 20 odd years – my first relapse rendered me unable to walk and blind in one eye. Remission is when you return to previous function, not that you are suddenly cured, just recovered
It took about 3 months for it to settle and I was able to walk on stage n pick up my degree and then I forgot about it, lived my life, went round the world, even was on telly a few times, had a few men lol birthed a few babas and just cracked on
Now 20 years on, I am getting very alowly worse and various things no bother me daily – like waterworks/balance etc
I’ve never taken DMDs – but now I’m secondary progressive… I had a good run and you will do too if you try not to worry about what hasn’t happened, what might not happen (I think some people do rumble on with it for decades, as I did – but yes, until they find a cure or even a dmd that works on progressive, we are at the mercy of the pharma industry

I wholeheartedly believe in ldn as a first line btw


rachaellouise
6 months ago

@mermaidia11 – So you was in remission for 20 years then ms symptoms came on again ? Oh right well you did well!


mermaidia11
6 months ago

I had a few blips along the way, had one more hospital stint in 2002 after a Ridic honeymoon to a lot of far flung hot places, then swerved it by being a bit more careful with heat/partying etc
Obv had bad days love!
Maybe you should read up on rr/progressive


chezy17
6 months ago

I don’t look at statistics, maybe because I don’t want to know what could happen in 15 to 20 years. Don’t even know what will happen tomorrow, hopefully a lie in my case…but I can but dream 😂😂.

I do know that I will get to New York one day whether it be me walking or my besties wheeling me around in my pimped up wheelchair as they say 😂😂😂.

Maybe it’s mind over matter aswell? I don’t know but we could spend hours, days over thinking on what could happen and maybe miss out on the now.

Have fun at Yoga chick because doing that is a battle won in itself 😊.


nutshell88
6 months ago

What really makes me sonder is me getting my second relapse the year i started treatment. I stopped treatments all relapses stopped. And what makes me wonder even more how come people with simple lesions get horrific relapses sonetine and my brain is well cooked with lesions and got an atrophy yet no relapses. There has to be a key that fires up the relapses. It cant be just all random we are alp same mankind. My body is actualy quite weak and my joints got hyper flexibility and honestly all thr


nutshell88
6 months ago

Sorry it posted by mistake i mean most of the pain wich is so lil is in my joints lil burny feeling in my lefs and feet but im in saudi my lega and feet would to be aliens if they didnt feel hot either way 😂


edmontonalberta
6 months ago

@rachaellouise

“Stats say by 10-15 years go in from RRMS to Primary progressive” My understanding is that PPMS is a stand alone variation of MS.

I just Google Searched; I can find nothing that supports your statement. Clarification please…


hollylb10
6 months ago

Do you know what I do? Some may call me silly….but I just carry on as normal, constantly fighting back the bad days! Mind over matter, healty lifestyle, exercise, good diet, relaxation…..I have probably had ms for 12-13 years now….only diagnosed in 2014/15. It started with Lhermittes – I had no idea, just thought it was a bad back. I was probably 20. Never went to the dr and I’m so glad I didn’t as my 20s would have been wasted away worrying. I mentioned it once at an appointment as it came to mind and the neuro said that was my first symptom! Just try an carry on as normal, keep yourself fit and healthy x


rachaellouise
6 months ago

How have people like George Jelenik and Dr Whals and Diane Capaldi . How have they reversed ms if your destined to progress with a “progressive disease”
Do they still have the disease ?

Rachael


hazman1066
6 months ago

Want to add me to Facebook my name on it henrymarston if u want to chat I have ppms had it 21 years old


cherish
6 months ago

Good morning @rachaellouise

I transitioned to SPMS 2012.
I knew I had because there were no more relapses and my bowels, bladder, walking ect was slowly declining.
And still is.

Then low and behold 2016 and 2017 I also relapsed. Both the same, right eye wouldn’t close (it had to be taped down), then it spread into my right nostril (numb), then down my right arm (no movement).
So it was noted and I was told I could keep experiencing relapses, so its now SPMS with Relapses.

What I’m not sure of Rachael is that when ppl with SPMS or PPMS have HSCT.
I was under the impression that the damage that had occurred can’t be reversed, yet quite a lot say that everything is reversed and halted.

It’s a strange ‘bitch’ is MS.
😂😂 xx


annie13
6 months ago

I suppose the people you are referring to believe that the programmes or protocols that they followed helped them to get better. That is why they have put it out there for us to follow should we wish to. I believe that these people aren’t cured but maybe in ‘remission’. If they stopped following their own recommendations, then disease would be active again. Just a guess!


mmhhpp
6 months ago

@rachellouise

I agree with you i do not get it. I believe they don’t have the same illness.

I have been going down rapidly since after 5 yrs. I don’t believe few broccolis will sort this out. I eat healthy anyway.

I saw today an interesting publication may explain something

Multiple sclerosis: Cholesterol crystals prevent regeneration in central nervous system

https://www.sciencedaily.com/releases/2018/01/180104153439.htm


chezy17
6 months ago

I have to say I agree with Holly, you could waste your life worrying about what could be rather than living in the now!

You could research it till your blue in the face but it means your constantly letting it win by always thinking about it. Everyone has their bad days and their battles with it, no two peoples MS are the same.

I really do think mind over matter helps but maybe that’s just the fighter in me 😊.
Happy 🌞 Sunday 😊!


kelics
6 months ago

Well u cant explain that because its an individual illness, and effects everyone diffrently. Some just got luckier than others. Im progressive, everything ii tied so far, has 0 effect, while others benefited from the same things they tried. So i guess its just luck. Try different things


cameron
6 months ago

MS is progressive at some stage. Keeping all your ducks in a row is your best chance of delaying that and making the progression when it comes not as serious. By ‘ducks’ I mean: 1) meds 2) keeping as healthy as you can 3) avoiding stress 4) being looked after by a responsive and vigilant neuro team. Essentially a ‘negative incentive’: i.e. you won’t necessarily feel better but if you don’t have these things in place, you’re likely to be worse!


sigmadelta
6 months ago

I concur with all the above Rachel.
I too have spent hours reading Dr. Wahl and other ‘protocols’.
I spent 6 months on the Wahls protocol to the extent where if I looked at cabbage I felt physically sick! hehe.
But all to no avail which was disappointing when you look at her videos etc..
She apparently went from wheelchair to walking in 6 weeks… I think there has been a little literary and dramatic license used here.
Similar stories emanate around stem cell treatment.
“Miracles” abound but no consistent results reinforce them.
As kelics says, it is an individual thing. I also think there is a lot to be said for getting your mind off it somehow.
The brain is a powerful and virtually uncharted organ, capable of some spooky stuff..lol.
As can be seen so often with placebos.
This can also work in reverse of course, whereby you read so much about symptoms that you start to develop them yourself.
Whenever I see a documentary on MS, that night my spasms go into overdrive and I lie there just worrying.
You gotta just try and stay out of the negative spiral, MS feeds on those thoughts.


potter
6 months ago

I was diagnosed 10 years ago and probably had it at least 15 years before that. I had symptoms but my doctor kept telling me I didn’t have MS, he thought I was a hypochondriac. I found out quickly you could worry your life away. Spending too much time on the computer researching and worrying about the future. No one knows the future, you could get hit by a bus tomorrow. I am 65 and still walking (slowly) the only real problem I have is with heat. I had a mild relapse a couple of weeks ago and am recovering nicely but I have found a little heat from a shower or exercise causes a exacerbation. So I have to sponge bathe for now and wash my hair in the sink. I know two women that are in their 70’s that have had MS 30-40 years that get around using a cane. You can always try the Wahl diet and see if it helps you. If it doesn’t you can try something else. Potter


tessa
6 months ago

Hi all.
I think that it is RRMS to SPMS not PPMS isn’t it ?
That seems to be the perceived current wisdom
I personally think the whole thing seems so random that it is understandable that in my opinion very little advance has been made to find out what actually causes this. When I was first diagnosed aged 16 in 1965 it was just MS . I could never understand how so many different manifestations of an illness could all be lumped under one name.
However although I had an extreme incident…total paralysis from waist down for over six months with slow and complete recovery over the next six months…I actually then did go for over 40 years with absolutely no relapses and no symptoms.
Forgot it. Now I apparently have SPMS ..according to Barts I am an extremely rare and interesting case . Not that anyone has done much about that! But nice to know.
But on my return to the world of MS the only real change for me personally seems to be that it now has four types whereas in 1965 it was all one,


rachaellouise
6 months ago

@annie13
If we did the protocol and stuck to it does that mean we would be in remission for good ? If we went back to not following the protocol that means we would get symptoms again ?

Rachael


milan
6 months ago

I have been diagnosed in August 2011.
Iv been on few medications they worked for a bit then I go into relaps. I just started Ocrevus only had 1 dose, which you do it every 6 months. And honestly I am a Tradie no one knows I have MS, and I don’t like to tell people so they feel sorry for me. My legs used to get tired easy or even easier when I used to lift up heavy stuff. I also used to have a ‘leg drop or some call it Leg Flip’. But since my 1st dose of Ocrevus I feel 100% better. Legs don’t get tired, don’t have a leg drop/flop’ I even forget I have ms. And most of all I am able to run with my 3yr old son.
Can’t wait to see what other doses do, hopefully keeps getting better.


finn15
6 months ago

I have lived with MS now for 17 years. I think that yeah it’s affects everyone differently. What is constant is that everyone has the same road to travel, some just have a steeper climb. I’ve had no treatment and am now starting to explore alternative living (diet, exercise etc)
How we live (whatever hand we’re dealt) is our own choice. I’ve found remaining positive and thankful for the now, small things, the best medicine and I believe it really is mind over – no matter who or what your circumstances
Overcoming makes you stronger doesn’t it?…


nutshell88
6 months ago

My opinion and choices are quiet similsr to what @finn15 said.

With or wiout treatment if its meant to be u get relapses u will if its not u wont

Mysterious unknown diseases and illness like that makes my believe in destiny stronger. Makes me also accept whatever comes because its totally out of hand.


annie13
6 months ago

@rachaellouise
There’s no guarantees with these programmes. With regard OMS, George tells you that it won’t work for everyone. It’s not full proof but it’s worth the shot in my eyes! I definitely believe in mind over matter and a positive attitude. Easier said than done! But ‘normal’ life does have to resume at some stage, even after MS diagnosis.


nutshell88
6 months ago

juse as if i walk over s broken glass accidantly i treat it with first aid and carry on. Thats how ive always thought of MS. All i feel is lil pain which im asuning xaused by the hyper flixability im having because the pain is in my bones.
I totally ignore MS and never let it ruin my cup of tea morning for any reason i enjoy monents or sinply live them as they cone symptoms free.


rachaellouise
6 months ago

@annie13 But what is “normal life”?

What about those who are affected more than others. Do they create a new “normal life” perhaps .
Maybe that’s it !

Rachael


chezy17
6 months ago

You can have a normal life though chick, ok things of ‘normal’ may change but normal all the same. Nobody knows how it will progress, whether diet, dmd, lifestyle changes etc…will help. Everyone is different, no two people react the same nor does it affect people the same way. I know a few people with MS, a lady who is in her 70s and she still walks around as do her friends. I know she’s not had dmd and from what I know she just eats a normal diet. I know someone that does most things and she struggles and is in a wheelchair I think and there’s me. I’m on the go all the time and I have no idea what I will be like tomorrow let alone 10-15 years time nor do I think about it, there’s no point, what will be will be, besides too much thinking makes my brain ache! I think it’s the luck of the draw as to how it develops and I guess you just live your life the best way you can 😊.


edgarleroy
6 months ago

Some people think that the distinctions between the different types of MS are artificial and not supported by any objective clinical observations. In other words, we all have MS. When you “transition” to the progressive stage, it just means that all of the silent, nerve shredding, ongoing damage that has been there since the start of your MS has used up your neurological reserve, and your functional disability becomes very apparent.

We all need drugs that stop the immune cells that punch through the blood-brain barrier creating new lesions. We also need something that slows down the ongoing damage within the brain. While we’re at it, something that repairs the brain damage and maybe something to stop all of this from happening in the 1st place would be nice.

I’m liking how, unlike the antibodies, cladribine gets into the brain and depletes the immune cells there, as well as in the blood.


youneverknow
6 months ago

Hello rachaellouise- I stumble across these sites when I’m looking for something (In this case vitamin b12 & MS) related to my MS, and if interesting and not too cumbersome, I’ll respond.
It sounds like you’re confused or maybe overwhelmed. Although MS is quite variable, it is not variable in one person. Seldom is it nothing for a long time followed by severe. Severe is a good indicator of future severe, etc. But “severe” can be in the eye of the beholder. Let me give you an example- ME.
I’m 60 now. Was told I probably had RRMS (based on x-ray) in 1991. Confirmed later. I bought my high tech wheel chair in 1996, which is now in mothballs. I could always get up and walk, but back then, it was quite difficult. Wheeling through a supermarket with MS may be easier than walking. When you have RRMS, you have an abrupt attack and you get nerve damage (permanent) and swelling at and around the nerve, which subsides over time. Put together you get a symptom which is usually more severe at first and may go away over time. There also can be some minor nerve repair. On top of that, your body learns to adjust to what it has lost and maybe learn something new in doing so. So for example, when I couldn’t stand on one leg alne for more than 3 seconds, and I practiced 3 times a day, after steroids and being on betaseron, I slowly rebuilt my ability to stand and walk quickly on legs, eventually up to several miles. But I could never run again.
I got most of (everything) back by 2000 and no new relapses since (still on the beta), except for the twelve months on Avonex in 2001 during which I developed leg spacticity (which has almost subsided 17 years later!). But in the last 5 years my endurance in my legs was waned. Is it progression or a secondary pattern” Not according to MRI, that’s still the same. According to expert MS neurologist, what happens to the old MS damage? Might it change composition and nerve conductivity? Maybe.
So that brings up the question, what do I expect for the next 20 years? Well, honestly, I can’t complain. I don’t expect I’ll be too much different than many of my non-MS counterparts shortly. I can’t walk as far or shovel on the garden for as long. Will I be in a wheel chair unable to get up? I hope not. But my father was at 80. and he didn’t have MS. It’s all relative once you get through the hurdle of realizing that life won’t continue as planned.
FYI there is no changing from primary progressive to RRMS. That’s a diagnosis error or error in terminology. But they have Ocrevus now and I wouldn’t hesitate to get on it if at all possible. I know it’s weak, but over time you’ll see and know the difference.
MS screwed up my life and plans. Are you adaptable? Some employers are not adaptable. Some men (or women) are not adaptable. MS can also be a very educable illness. So freak out, yes, but keep it together also. There are no guarantees in life, and you never know what will happen, regardless. Can you handle the mystery that it is? Good Luck


californiadreamin
6 months ago

@rachaellouise

Lots of comments on this thread for sure! Couple things to comment on. First the 10-15 year estimate to secondary progressive is based on information that is now changed. Doctors used to believe that was the average time, but several things have happened:
1) People are diagnosed much earlier then before since there are MRI’s, LP’s etc. 30 years ago, the same person wouldnt have been diagnosed with MS nearly as quickly. So the clock starts earlier now.
2) The effect of DMT’s is changing the time it takes to move to a progressive state is the general belief. so what would have taken 15 years, may now take 25 or 30 years.

Regarding people that look like they got better, with OMS George from everything I have seen didnt pick himself out of a wheelchair but mostly never got worse. Some say he had benign MS. We will never know.

My wife was diagnosed more then a year ago. We are on Tecfidera and OMS. So far she is doing ok, is it the diet or Tecfidera or both? Dont really know and I doubt we will ever be able to tell. However, I really do believe George presents really good evidence on why OMS is likely to help. No doubt other things could help. Even if my wife gets worse, maybe without OMS she would have been even worse.

Your body does heal. MS does do damage. Its a careful balance that changes over time. Some of the damage is not immediately visible. Here are some important things though. If the neuron dies, I do not believe anything will restore it. If its just the myelin then there is a possibility that can be fixed even by your own body. People that get up out of wheelchairs probably only had limited damage. Ie the wiring was broken.

We are all in on OMS because its hard to argue with eating healthy and exercising. We hope to avoid other non MS problems at minimum.

Its a 3-5 year process to become stable on OMS. Its not a quick fix, but some have seen improvements soon. Jelinek doesnt promise miracles which makes me believe his research even more.

There are some really interesting drug results due out this year. Lots to be hopeful for. The goal for my wife is do everything possible to defer as much damage as possible. Even if for instance the EBV treatment will cure MS, it will not reserve the damage already done.

Recent research has shown the positive effects on good diet on MS and high intensity exercise on MS.

Do see what you can do with the sure things out there. Its never to late to start and if its only beneficial MS or not, why not give it a shot for the long term?


chezy17
6 months ago

I was scrolling through Fb as you do and I came across this pic, it made me smile. It made me think of you Rachel and any other girlies!! I couldn’t for the life of me post it on here, I don’t know how 😂😂, so it’s my new profile pic 😊. We’ve got this and if we haven’t then we’ll wing it 😊!


stumbler
6 months ago

These profile pics are a bit small to understand the full relevance. So, here’s a link to @chezy17 ‘s profile pic, https://i.pinimg.com/736x/aa/7c/48/aa7c4815954b70f1437bde01c0a6a729–dance-images-royalty-free-images.jpg to enable it to be viewed clearly. :mrgreen:


annie13
6 months ago

@ rachaellouise
Normal life is different for everyone. For me, it’s the same life i had before but with some MS related changes (better diet, taking meds, exercising more). I can imagine if you’re more affected with symptoms and have some disabilities this is harder to adjust to. But what are our options? Be at war with our own bodies, never accepting our diagnosis and live in constant frustration? Or try and adapt and use everything we have to make ourselves as well as we can possibly be. It’s a hard thing to come to terms with, being diagnosed with MS but we must try as I feel living in a constant state of worry about what may come, will inevitably do more damage. And as others have said, you could worry til the cows come home and it may never happen! Find things that you enjoy and distract you from the noise in your head x


chezy17
6 months ago

Thanks @stumbler 😊. How does everyone post things on here anyways?


stumbler
6 months ago

@chezy17 , Shift has never been a site for posting general pictures, apart from an avatar. 😕

Post Comment

You must be logged in to reply to this topic.