Does RRMS always progress to SPMS?

I was just wondering if it is at all possible to have a mild case of MS throughout one's lifetime?  I have had mild MS-like symptoms for 22 years now, without any major attacks..and symptoms which include bladder issues (frequency and feeling like I always have to go --this waxes and wanes,

sensory sensations-tingling, burning, very little numbness, pricking, feeling of liquid dripping under skin, vision issues (may have had optic neuritis right after I had the chicken pox), also some other minor vison issues like tons of floaters, weird distortions upon waking from deep sleep (goes away very quickly),

when cold fingers get a little numb quickly, same as with thighs, and when out in the cold i have pain in inner ear,

sometimes cant recall words, but this doesnt happen too often, no sexual desire.

I have not been diagnosed.  Last MRI's were 4 years ago of brain and C_spine and they were normal.  Is it possible to have normal brain and C-spine MRi's after having MS symptoms for 18 years? I also had normal MRI's years ago of brain and T-spine and normal spinal tap.

I believe I have MS because what else could it be after all these years?  All symptoms are MS symptoms, I am lucky they have all been mild.  The worst being the bladder.  It was my first symptom.    I have never had any problems walking, I can still work out fine at the gym doing strength training and eliptical machine.  My biceps and hamstrings seem like they may be somewhat weak as I am doing the exercises.

I am doing the OMS diet---Dr. George Jenelik.  If you would like to check it out the website is www.overcomingmultiplesclerosis.org.  I believe in this diet.  George JEnelik has MS, his mother had it too, and he has gone through all of the medical research and ;literature has come up with this diet plan-or lifestyle change that worked for him.  He has been on it for 10 years with no more progression and no symptoms of MS!!  There is proof in the works of Dr. Swank that a diet low in saturated fat works to stop the progression of MS.  

Anyway,  what I have found about the progression of RRMS is that it usually does progress to SPMS.  Does anyone have anymore information on this?  

Thanks for your help and taking the time to read my post.  

[Lulu54]

Hi - we haven't seen you around here for a while.  I'm glad to hear you are doing well - that is the funny part of the relapsing/remitting patterns of this MySterious disease.

Some people relapse frequently while others may do so rarely.  I'm glad it appears you are in the latter group.

As for always going from RRMS to SPMS, the answer is no.    It doesn't necessarily follow that course. It is possible that you will stay with mild symptoms your entire life.  

I'm glad eating a healthy diet is something you can stick with, but as we have discussed here many times, there is absolutely no proof or evidence other than anecdotal stories that diet alone works in slowing or stopping or curing MS.    But it never hurts any of us to eat a better diet - it will only improve our weight, cholesterol and blood pressure.  Fixing those things makes our entire body function better.  

be well, Lulu

[sllowe]

Hi Born,

No always. Though the majority of us are RRMS, we don't always transition into the SPMS phase, especially since the introduction of DMDs.

To give you an example, from what you describe, if you were dx'd with RRMS, I'd not suggest SPMS because that would include a more progressive loss of function than what you mention. Though all those daily symptoms you mention are nothing to shake a stick at.  They are life altering as you know.  

Are you getting any help for your bladder?
-shell

[jensequitur]

I think I agree with shell - if you've had the same symptoms for 22 years, and they haven't gotten better or worse, then it's probably not RRMS.  Relapsing-remitting MS has periods of relapse and recovery.  All forms of MS involve some sort of disease progression - it would be very unusual to have the same symptoms for 22 years and not get any worse.

Whether or not you believe that diet can cure MS, most diets I've seen for MS are healthy and shouldn't cause you any harm.

[kelly97]

Hi bornworrier,

I'm not sure if you should automatically assume that you hav MS.  You could have it, or you may not have it (especially if your MRIs have been clear for this long). There are a multitude of different things that mimic MS, some of which include:

Sjogren’s syndrome
other autoimmune disorders
Lyme disease
Lupus (SLE)
Sarcoidosis
Vascular disease

However, if you do have RRMS, I think the rate of people progressing to SPMS is being reduced by the DMDs.
It's good to eat healthy - I try to do that myself.  But there has been no noteworthy proven research that any diet like the one you are describing would actually stop the progression or symptoms of MS.

-Kelly  

[bornworrier]

Thanks for your comments...

Actually, there has been proof that a low saturated diet does work to lesson or stop MS symptoms and progression..Did you know that all of Dr. Swank's patients who stayed on his diet did well?? Every last one of them had badsically normal lives.  Did you also know that the Dr. put the entire family on the diet and not one of them got MS?  So the diet may also prevent family members from getting it.

There are many, many people who have done extremely well on a low saturated fat diet.
WIth this diet inparticular, the developer is a medical dr. and so he understands all of the medical literature and went through all of it, and determined what was important and what wasnt.  He is basing this diet and program on scientific evidence, not stories.  So you see, there is proof that it works....documented proof in medical journals.  IF you dont believe me, check out the website and see for yourself.  The proof is also in the fact that Dr. Jenalik is doing so well after all these years of being on the diet.  



If you could do whatever it takes to beat or at least stop this disease from progression why on earth would you not try a healthy diet that would do you know harm and at relatively no cost.  There is proof--an abundance of evidence that this does work.  
Why dont you take a look at the website...what harm could it do?

As for my symptoms progressing...i have had some vision issues over the years, that were not there in the beginning and also, i think i cannot take the cold as well as i used to as the tip of my fingers get numb quickly as do my thighs if im outside for a while.

The bladder has gotten better since the first 5 years I had symptoms, and the sensations, I did have most of them in the first few years, but i think the burning is new from about 5 years ago and possibly the water dripping under the skin sensation also from about 5 years ago maybe.  Its hard to say if Im getting worse, if I am it is not by much.  I dont have any limitations.  I can do still do everything I always have done.
Run, jump, skip, exercise at the gym, etc.  

I dont have all these symptoms everyday...they come and go.  

I am happy to know that you can have a mild case your entire life.  That is what keeps me going.  I really thought that almost everyone with RRMS does continue on to progress to SPMS.

Thanks everyone.  And for your own sakes, take a look at that website.  I usually dont push anything on anyone.  But I truly believe in it.  I have looked  alot at the medical research and read studies, and the diet (whole foods + fish)  along with supplements of vitamin D, fish and flaxseed oil, exercise, meditation, lowered stress all contribute to a healthier you, and boost the odds tremendously that you will have a fighting chance against MS.

Best to all of you and good health wishes!!

[jensequitur]

Once again, there is no magic bullet.  A diet low in fats is going to be a healthy diet - no matter what's wrong with you.

[sllowe]

Great - glad it's working for what you believe are dealing with.

Now if the diet could only heal the CNS damage and stop the subsequent problems that gives us we'd all celebrate. Sadly, diet doesn't cause MS, or cure the disease.

However, a true believer in feeling better w/a healthy lifestyle and diet.

[sllowe]

...sorry, meant I'm a true believer in feeling better, w/a healthy lifestyle and diet, etc.

Thanks for sharing your story and means of feeling better and sending good wishes back to you!

-shell

[bornworrier]

I really dont get it.  What are your reasons for not trying a healthy diet?  You don't believe it works?  Have you read the medical literature?  Do you know there is a direct link between cows milk and MS?  You really should take a look at the literature and then decide for yourselves before being a non-believer.  What about vitamin D?  All of the evidence that it can prevent MS and also help those who have it?  Do you also disregard that?   Inflamation (inflammation) is a large part of MS and this diet helps reduce the inflamation (inflammation) as well.

Look, I dont even know 100% if I have MS....and I am willing to try anything that will help me.  Why wont you?  What is the big deal if you dont eat dairy or steak if maybe, just maybe it will help with your symptoms and keep you out of a wheelchair?  Does it heal the CNS?  I really dont know..maybe it does.  But what I do know is that it can take away your symptoms and even reverse them.  If its helped others, maybe, just maybe, it would help you too.

How do you know what causes MS?  No one knows...but there is proof that cow's milk has a direct link and IS one of the factors involved.  So why would you continue to drink it, if thats the case?  

One other note...have you all heard of Terry Wahl?  A U.S. doctor with MS--not sure if it was Seconday or Primary progressive but it was a very, very bad case.  She also read the medical literature and decided her best chance to beat it was through diet as well as electrical stimulation.  She was in a wheel chair.  Months later, she can ride a bike for miles and miles....she did this through changing her diet mainly and the electrical stimulation as well.  She has a website explaining what she did and how she did it.
It is amazing.  It is very inspiring.  I dont know how you cannot read her story and NOT believe.  Just take a look.  What do you have to loose?

[bornworrier]

Just wanted to add...it is not a low fat diet...but a whole foods diet with fish and eating very, very, low amounts of SATURATED fats.  

And, I dont know if you have heard of MacDougall or not, but he is a doctor who is now funding a study to prove once and for all that this type of diet does help MS.  The preliminary results will be out sometime in 2011.  You can see for yourself on his website.
Dr. Swank was his mentor.  So once the results come out, there will be additional medical evidence that this type of healthy lifestyle works.

Google the MacDougall diet...and you'll find the website.  He also has an interview with Dr. Swank on there.  Its very informative.  

Best to all of you once again.  Im sorry if I come off as some kind of promoter of this diet.  I wouldnt believe it myself if I hadnt read all of the scientific evidence.  There IS hope out there...real hope...see for yourselves.  

[sllowe]

Born,

I'm pretty confused as to what you are saying because no-one has stated they are not willing to eat healthy. Or, that we are non-believers, or that we don't read medical literature. Quite the contrary, we pride ourselves in the factual information we share here.

Please don't confuse our responses to your post as opposition. No worries. Your points are very clear.

Take care,
-Shell

[bornworrier]

I am not taking it as opposition, although what you are saying is that there is no proof, but if you do read the medical literature then you would find that there is plenty of proof that this diet does in fact work to lessen, or even stop the progression of MS.  And you don't seem to have an open mind to that...you seem very very sure that it doesnt work. Professor Jenelik does site many, many medical references on the website that you can read and see for yourself.  

It is not about eating what you think is healthy for you.  (such as low fat dairy or canola oil).  Its about eating the right things such as whole foods, including plenty of greens, among other things.  It is not about eating healthy so that you feel better...it is about following a program that will enable you to stop progression or even reverse the effects of MS.

[Sumanadevii]

Are you aware that there are diets for anxiety?  In your past posts you speak about your anxiety often.  My question is, why are you not following one of those diets to control it?  It just seems you believe so much in nutrition that you would do some reading on the problem that has bothered you over the past years.  You haven't been diagnosed with MS yet you know anxiety is playing a role in your health.  Maybe it is something to look into to....Just a friendly suggestion.

[twopack]

I did go to the sites and read quite a bit.  I'm happy to say I've got the supplements going already (B vitamins and folic acid, D, and omega-3 from fish and flax but no multivit or E).  I need more work on the exercise and meditation parts for sure.  There is a big section on using medications, including DMDs.  They are an accepted part of the program, especially for people with more agressive symptoms.  Most of it sounds like what my MSologist advises -- sensible eating, regular sleep hours, stress avoidance, light exercise and carefully selected medications.

It will be forever before I see me following the OMS diet.  Despite any proof that might be offered, there are parts of me that thrive on animal protein.  I don't think I can trade one quality of life issue for another.  If my MS was more agressive I might decide differently.

From what I read, the goal must be total elimination of saturated fats.  People who cut back dramatically during the study faired no better in combating MS than those who disregarded the diet completely.  Even when elimination of saturated fat was successful, it took a minimum of six months for any benefit to become apparent and years for symptoms to start clearing.  Certainly worth it if you're inclined but a person's committment needs to be strong.

Over the years, I've found it's usually best for me to follow the Everything-In-Moderation rule.  I have difficulty understanding how you've became such a strong advocate of a very limited diet to treat what you term mild symptoms you've lived with for many years that, are not worsening and do not limit your daily activities.  You are not claiming this diet has kept your symptoms at bay over all these years are you?

I'm not sure why your original question evolved into an alternative treatment presentation or debate but the information is here now for anyone who wants to look into it.  Thanks for sharing.  I hope your choice continues to work for you.  Who knows?  Maybe more of us will join you down the road someday.

Mary

[gorlie]

I hope that the diet do it for you as I ate well all my life, kept fit as I served in the Armed forces for 30 yrs...and still got MS...didn't drink milk much as I am lactose sensitive...I think alot of people from the start were not eating well who were put on diet..so getting on a low saturated diet will do good for anyone for sure...MS or Not..

Blood test always been top shape...a clear healty bill all the time and still now...except for the darn MS...

Nora

[bornworrier]

It is not about eating healthy....or what you think is healthy....the main point of the diet is saturated fats  no more than 20 grams a day.  Then adding no dairy, no animal protein except for fish, no oils except extra virgin olive oil, basically eating a whole foods diet with no preservatives, etc....and then taking vitamin d, fish and flax seed oil, exercise, meditation, etc....

People think they are eating healthy, like I THOUGHT I was...but before actually reading about what healthy eating actual is, I realized I wasnt eating as healthy as I thought.

A combination of things causes MS...one of them may be diet, but it is not diet alone.

THe reason I am trying this limited healthy diet, is because even though I have very mild symptoms, MS does progress and there is no guarantee that it will stay mild.  I am trying to prevent that from happening.  Doing whatever it takes to stay as I am.

[gorlie]

Well you don't have MS first of all so you don't know if it's helping all MSer's..No one knows yet scientifically what causes MS...And don't get me wrong I  know about good healthy habits, I know all about fats..What is wrong in our days is all the chemicals in food...that it is greens or meat... There is no food without chemicals unless you cultivate it yourself.  That;s what is killing people...Anything you put in  your mouth is somehow was in contact with chemicals...

Nora
PS Good luck to find out what is your medical situation.  I know I have MS

[ANonnyMouse]

Personally, I think self-treating with such a strict diet when you have no actual diagnosis could be cause more problems than it purports to cure. Self-diagnosis based on Dr Google is just as dangerous, particularly if other issues such as an anxiety disorder, are present.  

In my limited experience, it would seem that aside from the sensory symptoms you mention, all the other symptoms could be related to stress and anxiety, side effects from antidepressant medications, or circulatory issues common in people with a sedentary lifestyle (which is becoming a lot more common since the advent of television and computers as leisure activities.

Regardless, if you follow a healthy eating, meditation and exercise plan regardless of whether you believe it will cure or slow the progression of a disease you may or may not have, then you will benefit. Almost any health issue can be made, if not better, at least more bearable, when you put good fuel into your body, exercise to keep your blood circulating and your muscles working, and look after your mental health with meditation and mindfulness.

[Tingles29]

Bornwarrior I agree with you!!!! Obviously I don't know anything with scientific blah blah blah but I've known people and my holistic doctor has treated people and successfully reversed MS and other diseases as well through detox, nutrition, and supplements.  People that beleive in natural medicine will always be in the minority.  Even the doctors are in minority.  As long as YOU have faith in it and it makes YOU feel better than don't worry what other patients or doctors say.  All you can do is suggest an idea and if someone listens then great, but if they don't, then that's their issue.  I personally was healed from a 4 year battle of Epstein bar virus with many many many issues. Medical doctors kept saying u seem alright it's just anxiety. Yet I was sick, depressed, and lonely!  My last resort was a holistic doctor that was originally MD. I never thought in a million years this guy would be able to fix me up.  Sure enough after 5 months of nutrition and supplements he gave me my life back!  It's understandable how something so simple like nutrition and supplements can be looked at like " yeah right that isn't going to help me or cure me", but the body is capable of very powerful healing.  If I get a diagnosis of MS I already know I will take the natural approach. That's what will work the best for me maybe no one else on here.  Just remember you will hear more negative comments from everyone than positive but if that's the approach you want to take than keep the negativity away from you because you will need positive energy to help you through you're battle.... This comment was not to start a debate I can care less about statistics and what's been proven or not.  HAPPY NEW YEAR EVERYONE!

[bornworrier]

I really didnt want this to be a debate at all.  First of all, a dr. many years ago thought I could have MS.  He did notice the toe relfex...(cant think of the name at the moment).
And, I dont think stress can cause the vision problems I have and the bladder problems.

After having the chicken pox when I was in my 20's, I think I got optic neuritis.  I had cloudy vision in one eye..almost like a film over it.  I think it lasted a few days.  At the time, I had bladder issues and didnt put the two symptoms together.  The opthomologist did not mention MS or optic neuritis, I dont know why.  

I have other weird vision issues, like when waking from a deep sleep, my vision is sometimes distorted, or it looks like a fuzzy tv screen.  I have read other MSers having the same on other forums.  Also, if I look closely, I can see what looks like thousands of tadpoles swimming.  Its the only way I can describe it.  Its always there, just hard to see unless there is a light or white background, or when I look up at the sky.  

Also, my hands and feet fall asleep easily, I have had the sensations I mention..tingling has been all over, even my eye balls at times. Burning is like a sunburn...its not that bad though, and Ive heard other msers describe it as such.  I also have some hearing loss and mild joint pain.  Also the weird sensation of liquid dripping under my skin....i also have read other msers describe that.

So, I do believe I have MS.  After all these years, what else could it possibly be?  I have anxieties because of my health...and I also went through a very bad period in my marriage which has since gotten better.  But it was bad for a long time.  

I am not going to mention the diet or lifestyle anymore...but all I want to add is that it gives me and the others who follow it, hope.  More hope than any drug can give.  I am not saying the drugs are bad....like someone posted, the OMS diet does not say NOT to take the drugs.  Im just saying that the studies on diet have shown much more improvement for MS than any drug ever has.

Yes, the diet is hard. Yes, sometimes I struggle..not really that I can eat certain things, but more of how hard it is in social situations or when going out to dinner. I think that is the hardest part.  

Happy New Year to Everyone and god bless!  

[bornworrier]

Just wanted to add that I am not on any anti depressants anymore, and I exercise, so I dont think my symptoms are due to those things.  

Stress may also cause sensory symptoms, but mine just seem to last too long for that and also, tingling in my eyeballs..and in my head....just doesnt seem to make sense that is would be stress.  I wish it was though.

[Sumanadevii]

There is a book called "The Anxiety Diet" by Jessica Winter.  It was featured in "The Oprah Magazine" in June of this year.  It has been proven when changing your diet to the "Anxiety Diet", it not only helps chronic pain, it lifts away that feeling of nervousness which is due to nutritional deficiencies.  My personal feelings is that it would be helpful to a bornworrier but I would check with my physician before embarking on a diet like this.  I do know that anxiety can play games with our bodies and make us sick where there is no "sick".  It many ways it is like me and breathing.  Yes, the lesion on my brainstem makes breathing labored.  However, it is the anxiety that makes it jump triple or more.....JMO

[COBOB]

Any diet that pushes one food over another or bans anything might not be a good idea.  "Man is a hunter-gatherer."  A varied diet is our anthropological heritage.  Most people should eat more veggies and whole unprocessed grains and less meat (about 7/8 veg grain and 1/8 meat.)  OK I can buy that.  While a diet high in fish sounds good (Omega-3 Fatty acids, etc,) not all fish is created equal.  Bottom feeding catfish should only be consumed if farm raised.  Wild catfish have high concentrations of  PCBs and heavy metals.  I'd also be careful with many ocean species, especially large predator fish and bottom dwellers.  Large fish at the top of the food chain concentrate toxins by consuming smaller fish (Large Tuna, Swordfish, shark) and bottom dwellers (skate, flatfish, etc) live in heavy waste.

My point is diets heavy in fish can lead to other problems.  Consider grass fed beef or bison, in smaller portions. Grass fed beef not only is lower in overall fat and in saturated fat, but it has the added advantage of providing more omega-3 fats.  Since I raise grass fed cattle and free range egg layers, I think I can speak with a bit of expertise here.  The less processed the food the better.  The fresher the food the better.  And above all portion control: 4 oz is a portion of meat, not a 12 oz steak. Support your local farm markets for really fresh food.  Buy fresh or frozen and forget the cans.  Many times, frozen food has a higher nutritional value than the same food in the "Fresh Produce" of your local store.

I see no need to over think eating. Consider stopping "fast food" and support the "slow food movement" in your area.  I also see no need to send $50 to some doctor to learn how to eat their diet. Most dietitians would disagree with these limited food specific diets.  If you really need to learn what to eat ask a dietitian, not an MD.  Doctors are trained in medicine and surgery and spend a pretty limited amount of time on nutrition.

Bob

[Willowwoman777]

My doc recommends the "MS diet" which he explains is as low fat (sat, esp) as possible. I can't say it has done much symptom wise, but is helping me to lose weight. He explained that they have found a link between cholesterol and MS symptoms. When I asked my pcp about it last year, he had said it was in the journals about 6 months prior. Bottom line is that we all have to work with our own physicians to find what helps us the most.

As far as you going so long w/o dx - what other things have they checked you for? My daughter was just dx'd with sjogrens and has many of the same symptoms of MS so because of me, they ruled that out first. I also have lupus and both my neuro and rheumie told me the symptoms can cross over. I know I have MS because I have many large lesions in my brain. So, that being said, if you have not been tested for anything else, you might want to begin to rule stuff out.

[bornworrier]

Thanks for your input, but the professor  who wrote the overcoming multiple sclerosis book did research for over 10 years to find the best possible diet suitable for Ms patients and to help them "overcome" MS.  He does not advocate eating as much fish as you like, talks about which fish is better for you, and what to watch out for as you described.  Also not to eat farmed, but wild fish.  

Most of what you are saying is what he advocates especially eating whole foods.  The no meat is because of the high concentration of saturated fat it contains.  

Also, a nutrtitionist may know about eating for general good health, but not specific to MS.  This diet is healthy and can do you no harm.

[bornworrier]

Yes, I have also read about the cholestrol link as well.  Im not sure what is allowed and not allowed on the MS Diet.  Are you following it to the letter?  And for how long have you been on it?

I did not go to drs for many years.  In my twenties, I had the MRIs and spinal tap and they found nothing.  When getting the results of the spinal, my mom talked to the dr. and she cant recall what he said now, but at the time we believed it was that I didnt have MS.

So I went on with my life.  Years later, I got some other vision symptoms, and some other issues poped up, but nothing to go seek medical attention...except the vision for which I went an opthomologist who didnt find anything.  

Life went on and I didnt think about it anymore.  About 4 years ago, I started worrying again.  Not because of new symptoms, but because the symptoms I had never really went away fully.  Thats when I had the MRI of the Brain and cervical spine on a 3t machine with and without contrast.  The results were normal--no demylenation present, no lessions....so i asked the dr...wouldnt something of shown up by now after having symptoms for 18 years, and he said yes, thats right.

I didnt go back to a dr.  after that.

[twopack]

That's sure true Bob about the fish toxins, food processing AND the doctors.  Docs usually order a generic diet based on the disease they are treating.  They look to the registered dietitian for recommendations about content specifics, patient teaching and how any portion of the diet for one condition will impact another.

I suspect that what goes into and onto our foods long before it becomes our food, is behind a lot of the disease demographics we see today.  We have made wonderful advances in treating and preventing disease.  I fear we have created many new problems to solve.

I'm thinking that "whole foods" are ones that are more often fresh and minimally processed?

Mary

[twopack]

BW, it's not necessary to refrain from mentioning your chosen treatment.  Members here care for one another and will usually voice concerns when we have them.  We aren't too shy that way.  We all need to remember that we can discuss a variety of approaches without demanding other members will agree or change.  

We can also question and express doubt about THINGS without becoming critical of PEOPLE.  Otherwise we will become but an echo of the doubting, accusing naysayers many limbolanders come here to escape.

There are MS "cures" held forth that are clearly scams that benefit no one but those who sell them.  Those should be displayed to warn away people who are too desperate for help to be discerning.  Otherwise, I believe the purpose here is to have open discussions.  We are NOT very likely to come to many universal conclusions.

I hear your frustration and understand your quest to find a solution for symptoms you hope to control or influence without knowing their cause.  I've been there.  It worked for a long time and I have no regrets about concentrating on solutions rather than diagnosis for many years.  I learned a lot and still prefer some my self designed 'treatments'.  They just work for me.

When the medical community leaves people without answers or solutions to health concerns, there is little choice but personal investigation to find relief and/or cure.  I do believe that sometimes the best course is to take our focus away from the diagnostic quest.  We may then learn to manage our own body.  We may one day realize that symptoms have faded out of existence.  We may one day develop symptoms that lead to a confirmed diagnosis.  In the interim, we haven’t missed out on life while sitting in a waiting room.

Bornworrier, I hope you someday find the specific cause of your symptoms.  In the mean time, I'm glad your life hasn’t become overly limited.  I'm also glad you've found a course that helps you feel better now while giving you hope for your future.  Feel fee to post updates about how it's going and when people have questions about what this is ….
That’s the time to fill them in on the details

OMS is a broad program.  It's more than most people can embrace all at once.  Hopefully we get some benefit when choosing to concentrate on smaller pieces of the total program.  We may find out some day that the limited diet of OMS is the MS treatment of choice.  Right now, it's the program’s most unique and questionable feature.  Dietary control of disease often looks promising early but fails in the end.  It's happened with MS before.  For me, right now, it seems more limiting than the MS itself.  But I can’t say you are wrong to take a gamble on proving us wrong and walking away with the best result in future years

There are possibilities other than MS to explain what has happened to you.  It is also possible that MS is the culprit.  Just be careful about labeling yourself at all.  You are an individual with unique limitations and talents.  Try to concentrate on BEING that person, without superimposing worry on top.  Sounds like you know what's right for you.

Mary

[MCBCON]

I recommend cookies.  I always feel better when I am eating a good cookie.

[COBOB]

And milk.  Have to get that Vit D!

[MCBCON]

For some from a cow, others from goats and others from a soybean.  But, for me just a cookie is fine.

[twopack]

The whole cholesterol thing puzzles me.  Cholerterol is THE essential ingredient in myelin.  If my body periodically needs to make myelin to repair what MS has stripped away, why do I want to drastically limit it's supply?

Oh yeah, I know my liver will most likely always supply all the cholesterol my body needs and in a much superior form for my personal use than any cow or chicken or pig can provide.

I must be missing the basics of the cholesterol and MS connection.

I figure the inflammatory aspect of MS must factor in.  Inflammation screams injury to the repair crews of the body.  They start laying down layers of cholesterol everywhere.  No damage in that little coronary vessel?  No problem.  We will fix 'er up anyway.  Will save us some trouble later.  NOT!!!!

Statins reduce inflammation and they do it at low doses of 5-10mg.  Is this what gives them their value instead of the drastic reduction of blood cholesterol?  I ask that because research has revealed that increased inflammation (measured by CRP and homocystine levels) can be a factor that increases the risk of developing cardiac disease.

So then, why did those Cox-2 anti-inflammatories that were so good at calming my arthritis pain get banned from manufacture because thay became a suspect in causing heart attacks?  Reducing inflammation is a good thing for the heart, no?  (While I'm at it, why can't I - me and my doctor - decide if it's beter for me to live with pain or risk heart disease?  Hummm?)

So I have managed to take this topic very far from it's origin.  Let's just use this rambled and scrambled collection of thoughts to point out that there is good reason real answers that last more than a minute are hard to come by, expecially where diet is concerned.

My apologies.  This 2011 thing could be taking a strange turn for me.
Mary

[twopack]

Thank you.  The mere mention of this dietary necessity has snapped me back to reality.  My mission, and I DO choose to accept it, is to go find one!

Mary

[COBOB]

So I'm really agreeing with Twopack on this.  Most (80%+) of the serum cholesterol is not from dietary intake, but from production by the liver.  The body has the ability to produce cholesterol as needed.  It has been demonstrated in several studies that major reductions in dietary intake for some individuals produces no or modest reductions in serum cholesterol.  That is why statins have become a first line therapy.  Statins block the liver's production of cholesterol   A normal liver can produce 800-1500 milligrams daily even in the absence of dietary fat cholesterol.

There is a school of thought that says cholesterol without inflammation is a minor risk.  There seems to be a causal link between chronic inflammation and arteriosclerotic cardiovascular disease (ASCVD.)  It seems that inflammation starts a cascade of events. While they have looked tha the COX-2 and other anti-inflammatory drugs, the issue may be the underlying diseases and their inflammation .    

The jury is still out, but it seems that keeping inflammation out of the body (be it naturally, with niacin, or statins) seems to be key.

Bob

[ANonnyMouse]

Have you talked to other people (without illness) about your vision symptoms to see whether they have experienced it as well?

The tadpole thing is something a lot of my friends can see if they look closely enough in the right light - it's usually more visible as a reflection in sunglasses or spectacles where you see an up close view of your own eyeball, or when you are able to soften your focus and not look at anything specific.

I've always assumed it's just normal dust and particles on the surface of your eye. Mine look like little pipes, angled lines and dots. I remember being able to see these since I was about 7 or 8 and had my first pair of sunglasses... my friends and I used to spend hours examining our eyelashes this way! LOL.

You mentioned chickenpox - did you know chickenpox can also cause neurologic eye problems for a brief period after the illness?  It's not common, but certainly a known complication of it, and might be a less worrisome explanation for your troubles than optic neuritis as a symptom of MS.

I can understand your need to find a cause for your symptoms - it's a painfully common battle of many limbo-landers. But don't discount the fact that symptoms are sometimes totally benign and/or unrelated to each other.

Either way, I'd urge you to find a good doctor who will listen to your concerns, book in a double appointment if you can so you won't feel rushed, and work with the doctor to find the root cause of your health worries. There are a raft of tests available these days to assist diagnosis, and also a process of elimination to rule out other things.

[ANonnyMouse]

Edit - I went looking for a picture to describe what I see, and came up with this, which explains it perfectly.

http://clearvieweye.net/blog/?p=84

[Sumanadevii]

I think what people forget is that this is a public board.  Your voice is allowed to be heard.  When you post you open yourself up to the OPINION of other posters.  We may or may not agree with your choice plan of treatment.  I personally think that is the function of the board...to gather ideas outside your own box.  If  posters are not looking for that, perhaps they should talk into a mirror.

[twopack]

OK......... this is a public board.  People invite themselves to join.  Most members then post with the intention of gathering a variety of opinions.  As you say, this is a place to gather ideas outside our own box.

Allowing all voices to be heard does not mean that all comments are acceptable.  Rules of common courtesy aren't suspended because we share via the public internet rather than on a public street.  

The top of each page identifies this as the Multiple Sclerosis Community.  That means it's MORE than a place to simply gather ideas.  It's people.  We come here for a variety of reasons.  Many of us have no alternate access to people who might understand what we experience.  Most of us don't open our vulnerable selves unless we feel reasonably safe.

Again, yes, this is a public board.  It's a public board with no edit prividedges for the general membership.  Our words linger a long time here once we hit the green button.  That's what I try to remember.

Just to be clear.  I think I heard you but there's a chance I didn't follow all pronoun directions correctly.  I do understand you often disagree with me.  No problem unless you are suggesting I shouldn't mention it when I disagree with you.  Like you, I believe there is little value to talking into a mirror.  I still believe opinions should be expressed about topics, not people.  I don't believe a disclaimer of friendliness tacked to the end of a post conceals the challenging tone that preceeded it.  I have never seen it suggested on the MedHelp MS Community forum that members shouldn't have or share opinions.

Mary

[Sumanadevii]

Mary, errrr...going on my past posts to you, I do not see any pattern of my disagreeing with you any more than another poster.  I have no clue where you are coming from with that statement.  You are more than welcome to go into my profile file page and pull all my posts up.  I think you will find what you have said untrue.  I have agreed with you more than disagreed.  So read...and see for yourself.

Also, I do hope you are not saying that I lack common courtesy because I disagreed with another poster. That would be rather silly.  In order for there to be a "disagreement", I perfer to call it a difference of opinion, there has to be two involved.  So, I disagreed.  The poster disagreed.  I see no problem.  Opinions are just that...opinions.

[twopack]

No further comment.

[Sparkysarah]

Phew..just got to the last post and was amazed where this thread went. It is healthy to express opinions respectfully and life would be very boring if we all agreed with each other.

This thread started out asking does RRMS always progress to SPMS so hope that you feel this was answered.  My understanding is that MS usually does progress to SPMS as the nature of the conditon is that it is progressive but the most important thing is that it is unpredictable and not everyone is going to fit in a box which means that it may not for some luckier people.  My Consultant said that there was some evidence that after 15 years from either onset of symptoms or diagnosis (if at the same time) the condition is likely to progress to next stage where there is an obvious decline.

I also believe that at the end of the day the bottom line is that there is no cure, it is a chronic progressive condition. We all have to follow the treatment and look after ourselves in the way that works of us as individuals and for some this will be diet, others activities and for many just managing symptoms and pain takes priority.

There is no right or wrong but positive thinking can help in the same way as a placebo drug. Personally I am still in the finding out stage of what helps me and I like to keep an open mind. I have found this year that taking time out and allowing myself some relaxation is beneficial and so I have been having a massage now and then. I am under no illusion that this will change the course of my MS..but it gives me the feel good factor and I find that touch is very healing spiritually and physically.

So that is my addition to this thread and I wish you all a very Happy New Year

Love and hugs

Sarah

[MCBCON]

The important thing is still cookies.

[Sparkysarah]

Yup I will go along with that one! Stem ginger butter cookies are my latest indulgence, along with a cup of English tea in a bone china cup mixed with one large spoonful of never ending humour!!!

[jujuminx]

I first read this thread yesterday and it has stayed on my mind since then for several reasons.
First, some of my symtoms (symptoms) are similar to bornworrier, and I too seem to have a "mild" case of MS (I realize this term is not acturate and bornworrier isn't actually dx with MS). After almost 20 yrs of the onset of my first episode, I am currently relatively sx free.
Second, I too chose to incorporate a new eating plan into my routine to "help" my chances of slowing the progresson of the disease and feel like I had some control. But I do so with the knowledge that it may be doing no actual good in regard to my MS.  It's a shot in the dark.
I guess what bothered about the thread at first was the assumption that this MS diet actually stops and/or prevents MS. And that there is a link between cows milk and MS. I don't believe any of that has been proven.
The initial question was about progression.  I believe the stats indicate that the vast majority of people with RRMS will progress (85+%)? So, obviously that leaves room for <15% of people with RRMS to not progress.  I am not sure how this is really measured though and if the majority of people who didn't "progress" didn't do so because they were dx later in life for example.
I chose the diet (not Jeneliks diet but closer to Swanks w/o the non fat dairy) b/c it helps me feel like I am in control of something with a disease I have absoltuely no control over. Yes, there are things I can do to mitigate the adverse effects on my body (DMD, stress relief and  perhaps diet), but prevent or stop the progression?  I don't think so. Still, I am hopeful that my MS will continue to progress s...l....o....w....l...y and I will have a long, relatively sx free, happy life.
I am grateful for this thread b/c it made me realize just how judgemental we can sometimes get when we are searching for the magic formula that will save us from our disease(s). We all want to be right.
My sister, who is a Chemist, told me that she believes many diseases (maybe MS too?) has a component that may eventually be traced back to toxins in our environment and that diet, no matter how much we want it to, cannot in and by inself repair the damage it may have already done to our bodies.  Perhaps in the long term we may see benefits, but short term, it is unlikely. So, if you chose the diet, do so not expecting anything in return.
As a person, who by the way, has always had very low cholesterol levels, ate very little red meat, and even less dairy, it is not an easy diet to follow, especially if you have children, and have a busy life.  But we all need to do what keeps us sane.

Blessings in abundance!
Julie

[bornworrier]

HI Julie.  Thanks for your post.  I was wondering what your sx are?  You said that they were similar to mine.  Im glad you are relatively sx free also.  And it seems like we have has sx for almot the same length of time.  Me, 22 years.

The reason I say the diet and lifestyle changes can slow or reverse the progression is because I have read about Swank's patients, and others. Also, did you read about Terry Wahl who absolutely got herself out of a wheelchair and reversed her symptoms?  There are many accounts that do suggest this is possible with lifestyle changes--not just diet.  Also, what about the Best Bet Diet.?? I think that is the one where the son has MS and he went on this diet his parents had researched and he is also sx free.


As for the cow's milk and Ms link...it has been proven.  There is a link to the article on the OMS website if you would like to read it for yourself.   And if you would like to read the OMS book, Jenelik does provide alot of proof that this diet and lifestlye changes does  work.  He basis this on scientific evidence...medical studies that have been done.  He has gone through all of the research himself--for over 10 years.  He has MS himself..his mother died of MS....he is doing this to help us, and for no other reason.
He has been symptom free for years....his MS seems to have reversed itself. If it worked for him andDr. Terry Wahls and countless others...then why woudlnt it work for us?

Im willing to give it a try and see.  It does take a while, changes do not happen overnight.  So we'll see.

Julie, I also wanted to ask you....how were you diagnosed
? Was it years ago with an MRI?  Did you have lessions?  I was curious because if we are similar as in sx and years having them....I wonder results of MRI would be similar.  Mine did not show anything but I did not have a t-spine MRI for many many years.  Brain and c-spine were clear after 18 years of sx's.

Another poster also mentioned maybe chicken pox caused my vision  problems.  Thats what the eye dr. said who I went to see back then.  He thought the chicken pox virus caused my vision issues.  

And for the person whose consultant said after 15 years RRMS usually starts to decline...well if I do have MS, its been 22 years and Im far from decline thank-god.


I just wanted you all to know that there is proof out there that diet and lifestlye changes like Professor Jenelik's OMS diet works.  I would not be saying so if there wasnt.  Maybe if you read the book or looked at the many links to medical studies on the website, you would see for yourselves.  Professor Jenelik is a medical dr.  So is Terry Wahls.  THey both have MS did the research, understanding it much better than you or I ever could....developed a lifestyle program and they both got better...and are living sx free lives....now if that isnt motivation, I dont know what is.

[COBOB]

The OMS website is not proof.  Show me the clinical study, its design and the raw data.  Too many "claims" are "proven" by incomplete and bogus science.  There are a few folks on this forum that have spent a bunch of time looking at studies and data.   Please don't accept claims and published information as proof.  It takes a bit, but reading the studies and understanding the design of a study will lead to the the one universal truth:

There are lies, there are damn lies and then there are statistics!

For every "study" that says "X" works, you will find "well designed, double blinded, control referenced study" that say "X" is junk.  If you don't see "double blinded" or "controlled," in the description of the study, THAT IS A RED FLAG.  If you see the word "RETROSPECTIVE" that is ANOTHER RED FLAG.  If the study doesn't compare so the number of true positives (Sensitivity) vs false negatives (Selectivity) that is a RED FLAG!  

As a health care consumer, you have to be able to ask the tough questions, since many of our doctors do not.  Just because it is 2011, doesn't mean there are no more con artists or snake oil salesmen.  I'm sorry to say this, but sick people with chronic diseases are easy marks.

The National MS Society states: "...Most of the diets that have been 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 of the claims made for dietary treatments are based on personal accounts, and the reported benefits may have been spontaneous changes that would have happened without any treatment."

If you think diet works, great.  I have not seen a large population double blinded peer reviewed publication that show any major effect on the long term outcomes (decreased ESDD, etc.) of RRMS patients.  Most of the data I have seen is based on subjective anecdotal evidence.  
SHOW ME OBJECTIVE BLINDED EVIDENCE and I will rethink my position, but until then, it is the same Snake Oil whether it is sold by an MD or a side show geek.  Selling books is pretty profitable:

While this is a public forum, and folks may exercise their opinions, I will feel free to exercise my science.  A quick trip to the National MS site will show that they do not accept any evidence that "special diets" have been proven to effect the overall outcome of this disease in PwMS.  Caveat emptor!

Bob

[COBOB]

That should have been EDSS (Expanded Disability Status Scale)

Bob

[jujuminx]

My first episode was late in 1992.  Woke with tingling and numbness on the outside of my left lower side (from hip down to foot).  Didn't effect my gait. No pain what so ever. Went to the dr then neurologist.  Lots of bloodwork, neuro tests, MRI of the head (w and w/o contrast). All came back normal. Sx eventually faded in about 8 weeks.

Second episode in 2000. Woke with similar sx. Again went to dr and neurologist.  Same tests, all normal.  Sx faded w/in 8 weeks.

Third episode April 2010. Woke with tingling, hot sensations and minor numbness on left side. Delayed going to dr this time. As time went on sensations increased.  Also feeling of liquid on left side and some burning sensations.  Back also hurt alittle and so did neck.  Eventually went to dr and neuro.  All same tests normal, sx beginning to fade. Took trip out of country to central american country during the summer where air conditioning  isn't a norm. Numbness/tingling/pricking returned but on right side. When I got home went to neuro.

At this point I finally had had enough and had pretty much dx myself. Figured if dr knew what he was doing he would order the tests I knew he needed to order to dx. He did full work up and found minicule deficiency in right foot reflex (but w/in normal range), all other assessments completely normal. He ordered MRI's (all head and all w/and w/o contrast) from 1992 to present to be compared to see if any changes. And ordered spinal MRI (cervical and T) w and w/o contrast (this was the first time this was ever ordered). Said would do LP if MRI negative.

Spinal showed 3 to 5 lesions (some old, some active). He said he could do LP if I wanted but MRI was enough to make dx.  I declined the LP. He did order bloodwork to ck my D levels which turned out to be low.  W/in 10 days of dx (August 23, 2010) I was on copaxone.

Numbness is gone but I ocassionally get tingling, burning, prickling and liquid sensations on my arms or leg. Have some issues with numb fingers every now and again especially in cold weather. No vision issues but no lesions found in my brain. Since sx for me in lower body it was no wonder lesions found in my spine not brain. Duh.

I started the special diet before my dx so I could feel like I was doing something before I got the official dx.  And while I totally understand why you believe what you believe and have made the choice you have made, the truth is there is nothing out there right now that stops the progression of MS. You will find a lot of testimonials and some medical reports on diets but from what I have read the test subjects come from a very, very small pool and the results are subjective.

That being said, I strongly believe in the power of the mind and I also feel that if you feel this is helping you (and it most likely is both emotionally and physically due to the whole foods approach), then you should continue with it.  I am making the same choice.  Please try and understand that there are people here who have an official dx of MS, have done a lot of research, and are making a different choice based on what they believe.  Give them the same respect that you are asking for.

None of us want our disease to progress. But all of us live with the knowledge that our disease may progress and that our future is unknown.  My dx has been a blessing in so many ways.  If I could chose not to have MS I would chose not to have MS but since I don't have that choice I am learning to use the fact that I have it to enrich my life. There is a reason for everything.

Welcome to the board and keep posting.  Hope you continue to have thick skin as some subjects are touchier than others.

Blessings, Julie

[bornworrier]

I am not saying the OMS website is proof..what I am saying is that on the website there are links to medical literature that supports the lifestyle changes suggested by Professor Jenelik and others like him.   Again, he is a medical doctor, he has gone through the literature that non doctors like you or myself cannot interpret as well as he can.

He is not a quack--he HAS MS!!! and Terry Wahl is not a quack--another doctor with MS..have you seen her video....?  She hosted a conference to the medical community explaining her condition and what she did to change it.  

Im sorry you dont believe, I really am.  There have not been studies done because non one will fund them.  The drug companies sure wont as they only fund drug studies.  Dr. MacDougall is conducting a study now, and you can read about it on his website that will prove once and for all that diet does work in fighting MS symptoms.  

Julie--

Thanks for answering...dpo the liquid sensations feel like water dripping under your skin.?? I did have MRIs of the brain and have vision issues, so I dont know why nothing showed up...I also have tingling in my head, and other strange sensations from time to time.  my bladder starting bothering me a month or so after I had my first and only bladder infection.  It was never the same after that.  Maybe the anti-biotics had something to do with it..who knows.  

The tips of my fingers get a little numb also when I am cold.  And my thighs get numb kind of quickly when out in cold weather.  

Im glad your MS is so mild..and I wish you all the best.  I hope it stays that way...what does your dr. say about that???  

Take care.

[jujuminx]

Yes, feels like liquid dropping on my skin.  Always fools me and I look down.

I had lower left side abdominal discomfort on and off for about a year before dx.  Lots of tests run (CAT scans, colonoscopy, etc) with nothing found.  Have small cysts on both ovaries so they are thinking that it was from that.  Unfortunately my GP gave me Leviquin antibiotic when she thought perhaps it was an intestinal infection. Leviquin is NOT recommended for people with autoimmune diseases. I stopped taking it when I started to have tendon pain.  I am thinking maybe the discomfort is MS related?  Have to be careful about assuming all aches and pains are MS related but should also look at the possibility. Haven't had the discomfort in a several months so I am not pursuing it any further at the moment.

My doctor doesn't believe that there are mild cases of MS, just slower progressing ones than others.  He thinks I have a slower progressing one but he also said that only time will tell if that is true or not. He was very, very optimistic and said there wasn't any reason for me not to be as well.

I asked him about diet when first dx.  He said nothing definitive and left it up to me to decide if I wanted to follow a certain way of eating.  He did recommend that I stay away from sites that offer MS cures but gave me a lot of literature on official MS sites. Says there is a lot of misinformation and it would serve me well to not get caught up in it.

I am sure you know that Dr McDougall's diet is different from Dr Swanks? And Dr Jenelik's diet is yet again different from McDougalls and Dr Swanks? McDougall actually claims that diet can cure MS. To me this is a huge red flag on so many levels. Doesn't it set off any alarms for you? Can't tell you how many times I have heard the line that something is a cure but the big drug companies don't want the word to get out due to a negative finanical impact (ie, have been hearing that for decades with cancer treatments).

I have found that relaxing and living in the moment and not being overly focused on my disease has in fact helped lessen my sx.  Getting overly fixated on any one thing (including diet) brings me stress.  I do my best, I eat well, I take care of myself and I let the future unfold. Come what may, I am not missing a moment due to fear.

Blessings,  Julie

[Tingles29]

I'm pretty sure the people that reversed their condition isn't losing sleep on if anyone believes that a diet can help.  All the research in the world don't mean much of anything to me.  If it did I would have never seen a holistic doctor and been HEALED from years of misery and pain with EBV.  If I listened and drawn conclusions from research then I would have just had to live with the symptons and the chronic fatigue that the medical doctors told me to get used to.  Bob maybe it's all coincidences that the people that feel better just so happened to be faithful to the diet or maybe it was GOD.  What's the research say about prayer healing disease? I'm pretty sure medical publications don't say that miracles happen through the healing power of God either but I certaintly believe they do.  So am I supposed to believe and listen to everything the doctors say?  If people want to beleive and have hope of slowing down progression or even reversing it then more power to them.  Alot of the stories I've heard of success, the people weren't even selling anything. So not everyone is selling scams out there. Some just want to share their experiences.   Just because it's 2011 and their is no scientific data in the" precious" medical journals that correlate any improvements between diet and disease doesn't necessarily mean that's the truth. I'm stepping away for some time because reading these pessimistic comments aren't helping me out at all and just stressing me out.  I need stories of hope! Good luck everyone!

[bornworrier]

Just one thing I wanted to say about Julies comments.

Jenelik updated Swanks diet.  Swank died before alot of new research came out...i.e., how Omega-3's are important to MS patients, etc.  So the basics are much the same as Swank...and now it is even better so there is more of a chance of doing well while following it.  Oh, Dr. Swanks findings were published in a very prestigious medical publication....not sure off the top of my head what it was...maybe the lancelot..???

Also, Jenelik says that there is alot of evidence in the medical literature that lifestyle changes can modify the course of the disease.  I think that is very believable...
There are diets that help cancer...and look what diet did for President Clinton?? (no meat, no dairy, mind you...)  He is not promoting miracles here...just taking what has already been shown in scientific studies, put it all together and developed this program.

He also does MS retreats for patients in Australia. He is a very well respected Dr. there.  He has been on tv, and quoted in many publications.

I am just looking for hope here...hope that in 10, 20 years from now...Ill still be ok...thats it..bottom line...i just want to be ok.  Like all of us do. And now I have found something that may do just that.....enable me to be ok years from now...

[bornworrier]

Im with you./..thats exactly what we need..stories of hope.. maybe I should start a thread about that...no negativity allowed!!

[COBOB]

I think you might mean the Lancet.  Again, you need to read the studies.  Uncontrolled with small populations.  This is the key reason that the National MS Society says that the studies are lacking.  Attempts to replicate the original studies return conflicting results.  Once you add control populations and blind the investigators, the claims fall short.  Picking one person or one case or your personal experience is anecdotal evidence, not proof.  I'm not being negative and I'm not knocking the need for a good balanced diet.  Grass fed beef is very high in Omega-3 and the essential fatty acids.  That is a medical fact.  I would never go as far as to say you should only eat grass fed beef on an MS diet.  

What links your speculation to outcome?  Is the good diet the causality for the reduction is symptoms or relapse?  What are the false positive and false negatives in the the cohorts of the study?

I'm sure some people feel better with magnetic bracelets and harmonic whatever.  Yes, diet can help for some things: Rickets, Beriberi , etc.  Yep.  Statistically and scientifically proven.  Rebif, Copaxone and the rest of the CRABs....Yep  Statistically and scientifically proven for over 20 years.  Omega-3 and Omega-6 fatty acids...nope, but may be worthy of study.  There have been published articles that caffeine prevented EAE in mice, leech saliva re leaves MS symptoms and amiloride (a diuretic)  protects nerve tissue.  They all need more research.  I support research into diet, but again, the National MS Society and their doctors nurses and scientists stand by the statement:

"MS specialists recommend that people with MS adhere to the same low-fat, high fiber diet that is recommended for the general population.
T
The Problem with Special Diets

While many different diets have been proposed as a treatment, or even a cure, for the signs and symptoms of MS, evidence of effectiveness is very limited. 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.Most of the diets that have been 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 of the claims made for dietary treatments are based on personal accounts, and the reported benefits may have been spontaneous changes that would have happened without any treatment.

Some Diets May Be Harmful; Others Are Fine

Some special diets may be harmful because they include potentially toxic amounts of certain vitamins, or exclude important nutrients. Others conform to the low fat, high fiber diet recommendations of the American Heart Association and the American Cancer Society for all Americans."

If it make YOU feel better fine, but don't present this research as medical proof since it is far from proven.  This is like the miracle stuff on TV that has the disclaimer: "...has not been evaluated by the FDA and is not for the treatment of any disease or condition."

[Sumanadevii]

You are looking for hope for a disease that you have stated, "  I have had mild MS-like symptoms for 22 years".  You admit that in those 22 years you have never been diagnosed.  So what are you hoping for?  Just general good health?  or hope that you won't be given the diagnosis?  

I can give you some hope.  After 22 years I doubt you will see MS.  Surely by now the doctors would have found it.

[jujuminx]

Again, I dreaded posting on this thread cause I knew it could potentially be a minefield.  I don't find the comments negative b/c I don't take anything personally anymore.  A forum such as this is frought with the possibilities that what you say will be misunderstood. The type-written word doesn't even come close to conveying someone's real meaning or emotion.

I am so grateful for all of you who have contributed b/c I have learned so much, even things about myself.  So, everyone keep posting if you have something to say b/c there are those that want to hear the different points of views.  Gosh, I love this forum!  

Julie

[jensequitur]

Personally I think it's not very scientific to claim that your diet has cured your MS symptoms, when #1 - you haven't been diagnosed with MS, and #2 - no clear evidence has been shown that diet has cured MS.  As I've said before, any low fat high fiber diet is good for you.

[sllowe]

Born,

Grownups know all too well that individuals are entitled to their beliefs and hopefully those beliefs lead individuals to a peaceful existence in life not matter what is thrown at them.

That said, on this forum we are the dx'd, the misdx'd and undx'd and together we get through good and bad times despite our differences.

It's wonderful the diets you mention are helping you and others.  I can assure you that no-one on this forum is about to discount anything that makes them feel better even if  it's cookies.

DMDs are helping the damage caused by MS - it's a fact, and there is proof. The concrete kind --- drawn from yrs of imaging and clinical evidence. Though decisions to try them or not is very personal and one we don't push because we understand the downsides too.

Diets have changed the course of diseases for decades, it's a fact and there is evidence.  Diabetes comes to mind, but only using one for example purposes.

Truth of this matter is that here we all help feel each other feel more comfortable w/the choices available to us. We present those choices based on facts discovered by the medical community and the sciences. We try hard to understand that but we all have our own unique levels of education and experiences.

Having said that, what we don't do however, is use the forum as a vehicle to drive over our differences with hurtful words. It's what sets us apart.  If you can, please refrain from calling members to the mat, so to speak, by using such words as mystery disease, or insinuating we don't read literature, or that we are unwilling to try things. It's simply not so, and it has caused more than one of us to become defensive myself included and the reason is this.............

My life and the life of my friends here are working hard to get through each day w/ limitations and consequences directly caused by the damage to our CNS caused by MS. I'm here because I want to learn, and I want to support those affected by this disease and/or the mimics.

We are connected in a way that only those who live the life daily can understand - it's  priceless connections.

I hope this discussion can end now with some understanding on both sides.
Thanks,
-Shelly

[jujuminx]

Bravo Shelly.  Giving you a standing ovation.

Julie

[jensequitur]

Applause!

[COBOB]

Well stated.

[tjj3761]

Ditto sslowe... Thank you and well stated....

I have been on this wonderful forum for the past several years and NEVER have seen someone rant on and on as this person has done.

This forum is one that has brought so many of us together to help one another, comfort each other when there are those who do not understand this disease, listen and answer questions.

The only thing that I got from this post was somebody trying to sell a diet.....

As stated previously by others, there is no cure for MS.  Once you have it, you will always have it.....  There are only a handful of things we can do to try and lessen or slow the progression of the disease.  

I would hate to see a new member come to our MS forum and find this negative, ranting post about a diet, which is inconclusive.  Our new members usually stumble across our site looking for answers........

To the member who started this post, PLEASE take your dietary comments and soliciting elsewhere.  I pray you do not have MS........

Those of us here on the MS forum help and listen to each other....we do not debate....

terri

[Tingles29]

Give me a break Terri.  What is this forum a dictatorship?  Last time I checked this was a public forum.  Aren't you being a bit dramatic!!!  I'm pretty sure bornworrier wasn't solicitating or trying to sell you a diet.  Its a legit question and topic of discussion.

"Those of us here on the MS forum help and listen to each other...we do not debate..."
Just a bit extreme right there.  Guess whatever you say or the majority says everyone else should just sit back and accept??  No debating allowed??  I don't think so..... Any ways I'll take myself off this forum for good.  No black sheep allowed I guess.

I should hate to see a new member like myself come to You're MS forum and see how negative close minded individual can be just because the idea is in the minority.  

[COBOB]

I don't see this as an issue about dictatorships.  Most of us are very open minded and free thinking people.  We also respect each other for the most part.  The problem is that we do get people (companies) that open accounts on here and try and sell us their miracle yogurt, etc.  We also hope to educate people is how not to get sucked in by scientifically unsupported claims of cure, improvements, etc.

No one on here said that they were against healthy diets, but the "over statement of "cures or control of symptoms" for MS gets our hackles up.  We are aware of the MS diets.  We are also aware of what the third party research has shown in relation to the diets.  Some of the basic ideas are leading to research in Omega-3 and Omega-6 and neural repair, but the diets themselves have not produced repeatable results in designed and blinded clinical evaluations.  That is not a negative or abusive slander....it is scientific fact.  Sorry.  It would be great if I could eat a carrot and not have to take Copaxone, but it doesn't look promising.

I'll try and keep a smile about this, but hearsay is not proof.  Convincing myself is not proof (that is conviction.)  When a panel of neurologist peers accept the design of a study and the publication of it results, that is leading towards proof.   Diets didn't even get that far.   The authors results were published in the journals, the publishers printed the books and sold them to a bunch of us desperate MS patients and then the other researchers were not able to consistently duplicate the authors results in controlled blinded studies.

Some of us are Medical Doctors, Allied Heath Professionals, Engineers, etc.  In general, scientists.  We believe in the scientific method and the rigorous examination of data.  The MS Diets have not hit that level of rigor .  Neither has CCSVI, but we are holding out hope.

We debate...somewhat civilly and we try and support our claims and research.  We go back to source publications.  We don't like hearsay or anecdotal claims.  

If you have to leave, so be it, but I think you might have been able to learn a few things here.  We have some very knowledgeable people here.  If you put something out there, you can get called on it.  For the most part, the warnings and comments are made to educate folks that you can try any diet you like, but you should have no expectation that it will in any way change the course of MS.

[jujuminx]

Well said Bob.

Julie

[Sumanadevii]

I applaud both of you.  Wishing I had the knowledge and use of language to have gotten my message across better.  Thank you for speaking for me.

[angela5674]

Bumping for someone  :-)

[tjj3761]

Thank you COBOB for backing me and all our friends up....

I never knew I was "dramatic." lol

God Bless our forum.....  

Best wishes,

terri

[ennyh391]

Hi everyone, what are the classic symtons of ms? I was diagnosed with meneires and had taken dr strand supps recomendation. And I felt well. However lately I felt my head being so light and always feel as if I'm floating I can't describe the feeling well here. And sometimes I felt like my nose had a funny sensation and it creeps up to my head. Ahh my head sometimes felt like a pair of hands creeping. I also suffer from anxiety so sumtimes if there r no symtons I indirectly invite anxiety as I m so used to feel symtons. Pls can someone help me n tell me the symptoms of ms. Thank u.

[Lulu54]

welcome.  would you please copy your question and start this as a new thread?  You have posted this on the end of a very long and somewhat convoluted discussion about another MS related topic.  

I want to be sure that you get answers to your question and don't get overlooked.  

Lulu

[1suzannet]

Just read about "Dr. Swank" and his diet for MS patients. I'm having no luck finding any information about this on line - could you please help direct me?
Suzanne

[HVAC]

That is odd all you have to do is google it. You are welcome on our site unless you are a troll trying to push the "said diet". We here do not endorse the "said diet" or any other with claims. We promote good nutrition in general for good health but do not talk of diets as cures nor do we wish to open that debate again.

Thank you

Alex

[essdipity]

And thank you, Alex.

ess