Aa
Aa
A
A
A
Close
Avatar universal

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.  
77 Responses
Sort by: Helpful Oldest Newest
667078 tn?1316000935
With the medications to slow progression more and more people are like you. I wish you all good health.

Alex
Helpful - 0
Avatar universal
McDougall promotes eating grains, nuts, basically no meat. If you read the whole30 program,and the paleo view about grains, it makes sense that they cause inflammation. When my husband did the paleo/whole30 kind of thing, he felt better, had more energy, had to greatly reduce his diabetes meds, etc.
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome to our little MS community,

Gulp lol this was a 'very contentious' discussion which dates back to 2010, and the original poster has not been active on medhelp for years now......

Please consider opening a 'new question box' found at the top of your screen and introduce your self to the community, so we can get to know you!

Cheers........JJ  
Helpful - 0
15164089 tn?1438827038
I have to be honest, from your first post I wondered if this was a sales pitch and in my opinion it seems to be.  For those of us that suffer with MS, despite our diets, I find this offensive and I think you should take this somewhere else.
Helpful - 0
Avatar universal
And thank you, Alex.

ess
Helpful - 0
667078 tn?1316000935
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
Helpful - 0
Avatar universal
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
Helpful - 0
572651 tn?1530999357
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
Helpful - 0
Avatar universal
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.
Helpful - 0
911669 tn?1294099188
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
Helpful - 0
246236 tn?1275478902
Bumping for someone  :-)
Helpful - 0
1394601 tn?1328032308
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.
Helpful - 0
1382889 tn?1505071193
Well said Bob.

Julie
Helpful - 0
1453990 tn?1329231426
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.

Helpful - 0
Avatar universal
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.  
Helpful - 0
911669 tn?1294099188


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




Helpful - 0
1453990 tn?1329231426
Well stated.
Helpful - 0
338416 tn?1420045702
Applause!
Helpful - 0
1382889 tn?1505071193
Bravo Shelly.  Giving you a standing ovation.

Julie
Helpful - 0
198419 tn?1360242356
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
Helpful - 0
338416 tn?1420045702
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.
Helpful - 0
1382889 tn?1505071193
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
Helpful - 0
1394601 tn?1328032308
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.
Helpful - 0
1453990 tn?1329231426
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."
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease