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Calling Y’all Out

FYI: The “C” Word = Cure

Okay – I’m in a “mood” at the moment…

Let me just start off by saying that even though there are a lot of us with Multiple Sclerosis… There is not ONE case that is EXACTLY the same… meaning what works for one person, does not work for another. And that can be applied to medication, diet, etc.

But all I can say is, ARE YOU FREAKING KIDDIN ME?!?! I really HOPE this blog post reaches ANYONE who has or are claiming a bunch of BULL… HONKEY! (watching my language)

Okay readers, y’all know me… I don’t have a filter when it comes to speaking my mind! So that’s your only warning… lol

So, what am I talking about, you ask? I’m talking about all these “bloggers” who are sitting here posting LIES – just to benefit themselves in some way.

Now – I’m not just trying to single ONE ploy out… there are so many.

For example, look at CCSVI – all these MS patients got the CCSVI procedure done, and they still have MS! Which by the way, CCSVI has been debunked recently! Check out a publication by the Huffington Post HERE!

Now I’m not going to put any names in here, but there is a certain article… stating that the artificial sweetener (Aspartame) had actually ‘poisoned’ her family member… who was diagnosed with MS to begin with. (This diagnosis seemed to be made with out any MRIs or Lumbar Punctures, by the way) This certain writer/blogger then goes on to promote/market/sell a “special water system” for thousands of dollars…

Now check out this article that addresses Aspartame and MS

Now when it comes to all those diets that “Cure” MS. ugh! I can’t tell you how much I HATE it when the “C” word is used wrongfully! When people are using the word Cure in the same sentence as MS, it seems to me it’s usually for marketing purposes (this does not include any write-ups on studies, by the way).

So let me just get my opinion out there… It doesn’t matter if you have MS or not… your doctor wants you to follow a healthy diet, don’t smoke, don’t do drugs (the illegal kind), don’t drink excessively, etc.

Lately, we’ve been seeing a lot of “natural-remedies” and “diets” included in a phrase that is followed by … CURE MS.

Well – Don’t you think that if these natural remedies or diet plans CURED MS, it would be wide spread news… and no one would have MS anymore? Everyone says – the pharmaceutical companies’ and doctors don’t want you to know about it – because then they lose money… I like to roll my eyes to that one.

Here is my stance… If you have found a natural remedy or a certain diet that has improved your health… THAT. IS. AMAZING! There is no other way to go about it – I couldn’t be happier for those individuals who have tried something and their Quality of Life has improved!

What I DISAGREE with – is the word “Cure” being thrown around… so here we go:

Ashley’s Definition of a CURE for Multiple Sclerosis: A medication and/or technique/procedure that stops any future demyelination to a patients Central Nervous System to happen EVER again. BUT this certain medication and/or technique/procedure ALSO corrects any and all damage done to patients Central Nervous System due to Multiple Sclerosis.

How do you have a CURE for MS when there is not even a (for sure) CAUSE of MS?

By saying the above it means that for the rest of my life, if I have an MRI done on any part of my spinal cord – there will be NO demyelination that was caused by Multiple Sclerosis.

I hope that explains why I LOATHE the “C” word…. ((Cure)) – when being used in a misleading manner.

So – when it comes down to all of this… I have another thought… So – some of us have “black holes” from MS – basically a certain area/nerve in your Central Nervous System was attacked so much, to the point that the nerve ‘broke’…. How can that be “cured/fixed”…?

Since I’m “Calling Out” all of the people who use the “C” word… I want them to answer and explain, what I’m about to show/ask… (Mind you, I’m not “picking” on anyone – or being rude… I just want things justified and certain topics/content to not be misleading to the MS community.)

I’m going to show you images I made – to help “show” an MS Attack… (Cut me some slack, I never claimed to be an artist.)

MS Attack 1

Okay – so obviously – this is what makes a “lesion”… the myelin sheath, protecting the nerve, being attacked… which then exposes the nerve.

Okay so here – we have the myelin sheath & nerve being attacked so much, that it broke… causing a “black hole”.

Are we all on the same page now? I hope so…

Okay – so we have all been diagnosed with MS, because of damage done to our Central Nervous System, as shown above and that we see in our MRI’s as “white matter”. We are ‘encouraged’ to choose a DMD (Disease Modifying Drug) that may help slow our progression with MS.

Okay – so say we are reading about this AMAZING, PHENOMINAL, OUT OF THIS WORLD Cure that someone has come up with (that is not backed by scientific research). This person is claiming that their certain remedy (be it natural remedies or diets, etc.) that it will CURE MS **gasp**

They then proceed to explain that due to the specific remedy, that it has stopped MS progression.

**Pause right here**

Okay this is one of my “Calling Y’all Out” questions… – So, for example, Relapsing-Remitting MS… you can/will go in to remission for a certain amount of time. So keeping that in mind – How are you for certain that this “remedy/technique/diet” has “cured” your MS…? What time frame are you going off of? And I’m going to go ahead and say that most people are implying that they had NO new lesions and at times their Quality of Life improved.

Okay – now comes the BIG question for ALL of you that I’m calling out…

How does your remedy/technique/diet fix the damage that has been done to my Central Nervous System from previous attacks? Also – PLEASE explain to me, how it would go about fixing any “black holes” that are made, due to MS Attacks.

Now see, I know that all of these people who have claimed MS Cures just LOVE to justify themselves and their specific “treatment” plan. So please… I’m all ears… Please answer (in depth, w/ LEGIT proof) to the questions I have stated above. Oh and make sure you make this answer for the public to read as well.

One more… thought… for those of you who are promoting something using the “C” word just to make a profit off of us…WHY? I can understand people publishing and/or sharing their stories and what they have done that helps or has proven to help with MS, but I’m talking about the people who are trying to sell certain products that “cure” MS… HELLO?! Can we say false advertising? For those certain people, I gotta know… How do you sleep at night?

All right readers… here is what we need to do. We need to get this blog post to spread like a Texas Wildfire… We need it to reach any and all of those individuals who have or are using the “C” word under FALSE pretenses.

You think maybe we should go back to when we were younger, and wash out mouths with soap to those individuals who use the “C” word, under false pretenses?

**Note: I am not stating that all remedies/diets aren’t good for MS patients, or anyone in general, if it works for you… and it improves your Quality of Life, more power to you**

Yep – I think I let it all out… for now at least.

xoxo

Ashley Ringstaff

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lorraine
    5 years ago

    Thank you for calling them out. Shame on those using that “C” word to try to make a profit off of people who would do anything that it takes to stop or better yet reverse the damage that MS has done to their minds and bodies. Shame, shame, shame.

  • north-star
    6 years ago

    Thanks for this post, Ashley! It’s hard when people I love come across a news story about a drug or therapy and rush to send me information. As we are all acutely aware, there is no magic that can be applied to bring MS to a halt, much less reverse the damage caused by the disease. Diseases, most likely, since what works for one of us doesn’t necessarily work for all of us.

    I hate standing (sitting, more likely) in the position of thanking the messenger, then ignoring the message. Or do I explain why it won’t benefit me, especially when the subject is research that will take years to turn into a therapy? Or if it’s a “cure” like CCSVI that reputable physicians and researchers find dubious, how do I respond in a way that communicates that I’m grateful for their concern, but, alas, it is not for me?

    I love MS! I’m actively avoiding whatever it takes to get a cure! We need a Snopes website for MS, maybe a Wiki curated by researchers. Or maybe not; there is almost a willful dismissal of science these days.

    I dread food cure people– like the juicer You Tube guy in one of Ashley’s replies – and the supplement people who want me to boost my immune system so it can attack my nervous system with the strength of a tiger. They’re true believers and I am letting a mere $79.95, or fear of raw fruits and veggies, stand between me and much, much better health. Look at them! No MS! They must be doing something right! Twelve people on their website can’t be wrong!

    I find it hard to talk to someone who indulges in magical thinking. Here I sit, unhealthy me, I’ve done something wrong somewhere, turning down this miracle therapy that Big Pharma doesn’t want me to know about. What do doctors know, anyway? What do you know, you have MS! Gaaak.

    This is a vent-rant – it feels good to let it out 🙂 I could never say this to people who just want me to be well.

  • Misadventure
    6 years ago

    Thank You Ashley for the post! I wish any body that doesn’t experience or understand our struggle would read what we know is true. I have actually heard the snapping of neurons, it sounds like a ping. I believe the only cure may involve Gene Therapy advances? I have controlled some symptoms with diet and relaxation techniques. However, when summer arrives, all bets are off. I’m one of the Male victims of this as I refer to MS, The “Alice in Wonderland Disease”. I just found out about this forum, so read My story post? Having a Positive outlook is our greatest companion, keep up the fight.

  • Gabby Wilson
    6 years ago

    I’m still like a baby(a nineteen year old baby) when it comes to all things MS, and you know my doctors have never mentioned to me the “black hole” thing. I’m curious about it. I was diagnosed early and am afraid I could come across said “black hole” and not have any type of information about it. For example, would it hurt or is it just permanent damage that cannot be undone?

  • Ashley Ringstaff moderator author
    6 years ago

    It’s something to talk to your neuro about. It’s of course, different for everyone on how it affects you personally.
    Here are some links explaining it a bit.. http://www.ncbi.nlm.nih.gov/pubmed/20003089

    http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/magnetic-resonance-imaging-mri/index.aspx

    I know you’re ‘new’ to this… and it takes some getting used to. I was like a sponge when I was first diagnosed, just soaking up all the information I could. I guess I’m still like that, but I’ve learned more about the disease and can filter out things that aren’t necessary.

  • Wordsgood
    6 years ago

    Ashley, I’m old enough to be your Mom, but was only diagnosed less than two years ago. I still don’t know what kind of MS I have and I’m still trying to control the rage that I went literally, decades, without being diagnosed. All the signs were there, but it was always put off as something else. Only when an optometrist of all people, took an extra interest in my last episode of ON, was I finally referred to a neurologist specializing in MS. She recognized it before I even got my first MRI!

    I mentioned our age difference only because like you, they now figure I’ve had MS since at least my teens, if not earlier. I’ve commented on your articles before and you’ve probably seen some of my posts on the MS World Forum. (Though I haven’t been terribly active there lately.)

    Thank you, once again, for putting into words that which frustrates us all. Long before being diagnosed, I was the “lucky recipient” of just about every kind of snake oil cure you can imagine. Once I found out and starting letting folks know, it just got worse!

    I understand that some of the folks who offer up these miracle cures are doing so out of genuine concern, but why can’t they just back the hell off after you’ve politely thanked them? Have you ever had anyone actually get angry with you because you won’t follow their “sage” advice? I have, many times. Sometimes I almost wish these same folks would do what others have done, and just walk out of my life because “they” can’t handle it.

    Anyway, sorry for the rant. Just wanted to let you know how much I enjoyed your column, and how much I appreciate all the work you do to help us all.

    Hugs (the good kind, lol),

    Wordsgood

  • Ashley Ringstaff moderator author
    6 years ago

    OMG! You would not believe how many times I’ve heard that the eye DR helped them get diagnosed, after having symptoms “overlooked” for years!

    I’m glad you enjoyed the blog post! I’ll have to search for you on MSWorld.

    I have had people get mad at me for not following their “directions” to a cure… Actually, one of my husband’s co-workers posted a youtube video on my Facebook about “juicing cures MS” … and everyone that had MS on my friends list was livid. He ended up deleting the post, and deleting me.
    I did get a “half-apology” a few months later, but it’s like really? How dense can some people be?!

  • carol ciulla
    6 years ago

    WELL YOU GO GIRL
    my thoughts exactly i was diagnosed when i was in my 20’s now i am 70!
    you have no idea how many times i have said find the cause ; you’ll find a cure but what do i know i’m just an old woman on copaxone for xxxxyears.
    this is my first time getting news from m.s. and i must say i was quite pleased to read you’re very astute thoughts and this is the first time i have
    used the computer for anything except e mail..please excuse typing (one finger) hunt and peck

    Young people like you are a pleasure to have !!! free thinkers and not
    afraid to say whats on their minds!!!

    Thanks for the pleasure and

    YOU GO GIRL

  • Ashley Ringstaff moderator author
    6 years ago

    So glad you liked reading my blog! And good for you on your attitude w/ everything!

  • mastervalerie
    6 years ago

    Well said Ashley!!,I have M.S. but it dosen’t have me, I”m 3 years now into it, your right people need to STOP trying to make money off of the “C” word. I wonder also how they sleep at night!? I my self take a lot of vitamins Co-Q-10 800 mg works wonders for me anyway,met some people with M.S. and they all SWEAR by it!! now I do too.!. and vitamin b 12. b-6 and vitamin d -400 mg. are also great.I walk (try) to walk every day for 45min. and keep BUSY is the #1 best thing you can do ! I practice in the Art of” Bonsai” seems to calm the nerves and their beautiful to look at…just saying..

  • Ashley Ringstaff moderator author
    6 years ago

    That’s great to hear. I’m glad those things are working for you. Whatever works…. Just not for everyone, ya know? I agree with you on..”how do they sleep at night”
    I just don’t like people getting their hopes up on false advertisement.

    Keep fighting!

  • Theater Geek
    6 years ago

    Completely understand and agree with what you’re saying!!! It would be like me telling people go do all the theater you can…it cures MS!! Theater does help me, while I’m in the theater any problems I’m having go away for the time I’m there. I even start rehearsal for a cabaret while in a flare up and while at rehearsal I didn’t have issues…no drop foot, no tripping…nothing. But that’s me, I love theater, being able to “step” into someone else’s shoes, and the people in the theater (even tech week isn’t bad and that’s the most stressful lol!) that doesn’t mean it will help someone else that doesn’t love the theater or being in front of a house full of people acting like a crazy person depending on the role. Heck I played a man in the last show I was in (Clue), but I was ok with that, not everyone would be. Telling everyone I know with MS to go do theater would make the two community theater groups lots of extra money from membership fees but that wouldn’t be helping anyone with MS that doesn’t react to theater like I do. ANYWAY…I’m rambling (tends to happen when theater is involved) but point being I couldn’t agree more! 🙂

  • Ashley Ringstaff moderator author
    6 years ago

    That’s a good way of putting it as well! I love reading… it takes me out of my reality, and I don’t think about anything MS related… and by not thinking about it, I don’t feel any of my symptoms that might be happening (as long as they aren’t severe)… because I’m not ‘focused’ on my MS at that time! Makes total sense to me! Thanks for voicing your opinion!

  • Jessica Petroff
    6 years ago

    Vent away my dear and I feel the same way. My issue lately is all these supplements and diets being pushed so hard towards those with MS from others with MS. I have tried some of the diets for MS, but truly didn’t see any improvement in my MS or overall health for that matter. Just cost more money in groceries frankly and very time consuming in trying to locate most items for a particular diet and exhausting reading all the dang labels.

    I loved your rant, so thank you!

  • Ashley Ringstaff moderator author
    6 years ago

    Glad you enjoyed it! I have nothing against trying things to better how you feel or try and keep your MS in remission… but I just hate being solicited pretty much, to try certain things that ‘cure’ MS… when it really doesn’t… it might help people stay in remission, but who knows? Who knows how anything is done inside our body when it comes to our MS? lol

  • Fiona
    6 years ago

    Thank you so much for this blog Ashley.. It is terrific to read about all the thoughts in my head.. I was diagnosed with MS in November 2005. I was never told what form I had. I was put on copaxone for a 1.5 yrs then rebif for 1.5 yrs. then cyclophosphamide for 1.5 yrs. I had 2 different 10 day sessions of plasma aphresis. None of these things worked. All of this plus multitudes of times of steroids. My disease from the moment of diagnosis never went in remission. My disease has been active from the first moment. They tried all they had nothing worked. They finally in 2009 changed my diagnosis to Marburg Varaint/Malignant/Aggressive/Fulmiant. These are different names for my form..
    Marburg multiple sclerosis, also known as fulminant multiple sclerosis, is considered one of the multiple sclerosis borderline diseases, which is a collection of diseases classified by some as MS variants and by others as different diseases. Other diseases in this group are Neuromyelitis optica (NMO), Balo concentric sclerosis, and Schilder’s disease.[1] The graver course is one form of malignant multiple sclerosis, with patients who reaching a significant level of disability in less than 5 years from their first symptoms, often in a matter of months. [2]
    It took its name from Otto Marburg. It can be diagnosed in vivo with an MRI scan.[3] If Marburg Disease occurs in the form of a single large lesion, it can be radialogically indistinguishable from a brain tumor or abscess. In such cases, craniotomy and biopsy is needed to exclude other pathologies.[4] It is usually lethal, but it has been found to be responsive to Mitoxantrone[5] and Alemtuzumab,[6] and it has also been responsive to autologous stem cell transplantation.[7] Recently it has been shown that it presents a heterogeneous response to medication, as does standard MS.[8]
    Currently, Marburg MS is considered a synonym for Tumefactive MS.[9]
    References[edit]

    This is off Wikipedia
    They did the autologous stem cell transplant on me.. I am fixed.. I do get better every single day. My lesions are shrinking. My optic nerves were severely scared those scars are gone. This happened within the first year. My EDDS scale has gone from 9.5 to 1st visit was to 5.5 second visit at 1.5 yrs post transplant I was up to 3. 3 is the best I have ever been. I still get stronger every single day..
    Any more info.. I am open honest and will answer any question you have..
    Thank you for letting share my information.. I
    Just need to say I was done in Ottawa Canada and I was not in a trial..

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