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Facebook "Debate"

I thought that some of you might find this interesting or maybe even entertaining. You might just think that I am a big ol' meeie.  If so, I'm sorry.. I had a Facebook "friend" send me a link via Private Message for a "cure" for MS.  He insisted that he knew more than me about MS because he "wrote papers on MS". Wow! I live with everyday. I don't know anything. Maybe I was in the wrong here. I tried the "thank you and walk away" approach, but he just wouldn't let it drop! (I removed both my and his last name.) I apologize in advance for all of my misspellings and types in my little argument with him. It was almost 10pm when he sent this to me. Way past my bedtime, and I have been especially tired this academic year.

This is the conversation:

    Martin [Last Name Removed]
    http://tv.greenmedinfo.com/doctor-cures-her-multiple-sclerosis-with-diet-abandons-wheelchair/.
    8:22pm
    

    Amy [Last Name Removed]
    Cool!
    8:29pm
  

   Martin
   hope you follow her advise
   8:47pm
    

  Amy
  I know that you mean well, but I don't believe that MS can be "cured" with diet. There is just not enough scientific  
  evidence to support the theory. She may not have had any exacerbation over the years and her MRIs may be  
  stable or improved, but does not necessarily mean that she is cured, if she did in fact truly have MS. (There are
  many MS mimics. My cousin was actually misdiagnosed several years ago.)

  Trust me the first thing that one does when they are told it is suspected that they have MS is do all kind of
  research! It's not like I just sat there accepted everything I was told and blindly took any medicine that was given
  to me. I did and continue to do my homework.

  If MS could be cured with diet alone, no one any longer would have MS. Stories of the cure would be in the news!
  She would have won the Nobel prize for medicine I am sure! We would all just eat a salad or magic bean powder
  or whatever and be cured! They would stop raising money for research and no one would ever get diagnosed in
  the first place because we would be able to prevent it.

  While I don't believe that MS can be "cured" with diet, I do believe that improving the quality of of what you put in  
  your body can greatly improve the quality of your life regardless of whether one has MS or not. There are certain
  foods that I do not consume (artificial sweeteners) and foods that I consume in very limited quantities (beef &
  pork). There are other foods that I try to eat plenty of (leafy greens, legumes, other fruits and vegetables). I also
  take supplements such as Vitamin D. My Vitamin D levels tend to plummet and there is a link between low
  Vitamin D and MS. I have never smoked and I rarely drink. I have always had an active lifestyle which may be  
  why even though I have probably had MS since I was a child, I still have very few symptoms and the ones that I
  have are mild. My MRI's have remained unchained since I had my first one.
  8:50pm


  Martin
  It's your body, I'm just proving the latest information available.
  9:48pm
  

  Amy
  That's actually just one person's anecdote, not a scientific study. So no, it isn't proof of anything. Like I said, if she
  had truly cured MS, everyone with MS would all be cured. It would be in the headlines! She would win the Nobel
  Prize for Medicine! When one has a serious or life-long disease, rest assured they do not sit idly by. One thing
  that they do is A LOT of research! I am on a registry for studies. I am on several forums in which I communicate
  with MS patients and doctors all over the world. I read research online, from the NMSS, MSF, the Mayo Clinic, the
  Cleveland Clinic, etc., various MS publications, publications from the National Spinal Association, as well as  
  various medical journals. I follow studies in the US, Canada, Sweden, the Netherlands, the UK, Australia, and
  New Zeeland. I have read about the Swank diet as well as other diets and alternative treatments. I subscribe to
  elements of some treatments that I have found that work for me and I don't subscribe to those that don't, because
  that is exactly right. It is MY body. I have to do what is best for me, and not only what makes me feel well, but it
  also has to be a treatment and lifestyle that I can sustain long term. It's not just about me, but also about my child.
  9:58pm
  
Martin
I'm not arguing with you. I know what scientific research is. I know what MS is, I've had to treat patients with it and  
write papers on it. I didn't write the title of the article of the website. I sent you a video of a case study of physician
that had benefited from a specific diet. I sent it to you because I thought it might interest you. Not you show you
there was a cure or to say you haven't read there was research on it. It was an interesting talk and sent it to you.
That's all.


Then I couldn't reply to him because he DELETED me and BLOCKED me like I was some sort of stalker. Really? Who contacted whom here?  LOL! Oh well. At least I won't have to worry about him bothering me with any more "cures". LOL! I really thought that I was past the point in my diagnosis of people trying to find me magical cures. Ugh!
12 Comments Post a Comment
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Avatar_f_tn
I heard someone mention that Terry Wahls to me not too long ago.  Whether she even had MS would have to be a matter of debate.

I totally agree with you Amy, if there was a legitimate cure and it worked, we'd have all heard of it long ago.  I just plain don't buy the excuse that it isn't in the mainstream because of "Big Pharma" either because there is plenty of research going on by the MS Society itself.

I'm to the point that if I hear one more person tell me that if I don't eat, this that or the next thing my MS will be cured, I'll scream!   I'll also probably commit murder if anyone else dares to tell me that "so and so had MS and she was just fine".  I've got MS and it's anything but fine!!

Some people really do need to engage their brains before their mouths!!


Poppy
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Avatar_f_tn
Exactly! I finally told my sister this year about my diagnosis and she asked about diet, and I just told her that there are a lot of theories on diet and I have made some modifications to mine but it's not a cure. I will have this for the rest of my life, but I feel good and I am fine and there is no reason to believe that I wont continue to be fine for a very long time.

The guy that sent me the message is not even a very close friend. He is a nursing student and I almost feel like turning him in to his school  because I don't feel that his is being very responsible as a future practitioner handing out witch doctor advice. I feel like contacting the school and saying that I feel that he may be acting in an irresponsible or unethical manner as a future nurse by telling people to "do this" or "do that" and they will be "cured".  So what, is this lady keeping her "cure" a "secret"?  Is she only telling certain people? Does she only tell people who send her $19.95 plus shipping and handling? Because millions of people have MS, so if she really found "the cure" then why isn't everyone cured?

And HE is an expert on MS because he wrote a couple of papers during his undergrad? Are you serious?! However I live with it every day and I apparently know nothing!?! Well gee, I wrote a paper on Hispanic Gangs during my undergrad. I sure as heck don't consider myself an expert on the topic!

People like him to me are just maddening!

When I was first diagnosed, my step-mom said to me, "[My cousin's wife] had MS but she started eating really healthy and now she doesn't have it anymore." Well apparently from what I understand, she was misdiagnosed and never even had MS in the first place! I don't know the entire story, but it sort of irritated me that the implication was that it was somehow my fault because I didn't eat enough salads or something and if I just ate more salad or couscous, I would be magically CURED! *eye roll*

It still cracks me up that he BLOCKED me like I was somehow harassing him.
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382218_tn?1341185087
He just saved you the trouble of blocking him.  Good riddance, I say!
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987762_tn?1331031553
Amy 'some' medically trained people just don't like it when the sick people [eyes rolling] of the world, question their logic and or intelligence about anything medical, especially when they have gone out of their way (?) to provide unsolicited medical advice. lol

You the patient, just can't possibly know more than they do about your condition, na see it doesn't make sense for patients to actually be informed, intelligent and rational, cause your just the uneducated patient lol

hmmmmm the blocking could be due to his level of immaturity and or his inability to deal with intelligent women!

cheers........JJ

ps i'm racing off to eat my salad and couscous lol    
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Avatar_f_tn
My credentials:  I was diagnosed with RRMS in June of 2002, and I took disability retirement from my job in 2009.

I greatly admire Dr. Terry Wahls and encourage others to try to understand the therapy she designed and followed to improve her own functioning with SPMS.  (She was diagnosed with RRMS in 2000 and by 2003 had progressed to SPMS.  She continued to work even while using a tilt-reclined wheelchair because of weakness in her back muscles.)

Yes her program involves changes in diet, but it's much more than that.  It's intensive nutrition, progressive exercise, and neuromuscular stimulation.  (Neuromuscular stimulation has been used for rehabilitation after spinal injuries.  Years ago, neuromuscular stimulation was used for Christopher Reeves to help him regain some sense of touch in his body below the complete break in his spine.)

Here's a link to a news release about a study applying Dr. Wahls' therapy to other patients:
http://www.news-releases.uiowa.edu/2011/November/111411MS_study.html

The word "cure" touches a sore spot with a lot of people.  Dr. Wahls hasn't cured herself, but she has improved her own functioning tremendously—most impressively at the secondary progressive stage of our disease.  

I encourage everyone to keep an open mind.
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Avatar_f_tn
Keeping an open mind and being open to alternative options is one thing, but claiming that MS is "cured" by diet is another!

Also people need to choose the course of treatment that is best and realistic and sustainable for them, and not be scolded by others because, "that's not what they would do."

I also took umbrage with being told that he knew more about my disease because he wrote a paper in his undergrad (Which he is still in, he hasn't graduated yet.) and therefore I should take his advice.
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5504286_tn?1369696842
I'm with you, and some of the others who have posted here. Although I have not been dx with MS, I have had neurological symptoms for some years. It seems to me that there are any number of 'theories' and 'lifestyle choices' that claim to cure or improve MS (or MS symptoms).

Every person you meet has their own pet 'theory' as to what is best. Which they seem to think gives them the right to tell you that you could be 'better' if you just did X, Y, or Z, or if you just TRIED a little bit harder. Therefore, it's really YOUR fault if you are unwell. (Or such is the implication).

I am lucky that the people around me are supportive. And I am also lucky that I had some counselling about my health years ago, when my shrink told me that it was okay to trust myself and that I didn't have to justify my choices to everyone. I'm glad to see that others here have faith in themselves too - I know how hard ( and frustrating!) it is when others think they have the answers - or the right to tell you that you're just 'not helping yourself'.
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1756321_tn?1377771734
Bravo to Dr Wahls. Reminds me of Dr Barry Marshall who had to experiment on himself to find the cure for ulcers. The drug companies were not amused. :)
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1045086_tn?1332130022
We've had several good discussions in the past about Dr. Wahls' theories and the program she's used to fight her MS. Nobody wants to take her gains from her. Nor do we need to get into another discussion about it's merits for the rest of it.

Dr. Wahls doesn't claim it is a cure.

None of us being treated for MS have had our treating docs suggest it as a complimentary therapy - not as far as I know anyway.

Ojibajo has been very open with us in working through her potential choices to treat her specific course of MS.  She is clear about her present course and her opinion on this.  Each of us is allowed to choose and we have every right to change our minds at any time along the way.

It seems to me Ojibajo wanted to share her negative experience with someone she had thought she could expect better from.  Most of us know what it's like when everyone else seems to think THEY know what we should do about the disease WE are living with.  It s*ucks in general and hurts bad when it's someone close.

I'm sorry this has happened AGAIN to one of us and that it was you this time Amy.  Is this guy studying for a health care position?  They'll likely have him conforming to their standards shortly. lol

As the saying goes.... at least now you know who (and how) he is.
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Avatar_f_tn
He is studying to be a nurse. He was at the University that I work at but has transferred to a university on the other side of the state although I am not sure what the reason is. I do know that the nursing program at the University that I work at is highly competitive and not everyone gets in, that could be why.
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Avatar_f_tn
I just wanted to be clear -- because I think that some may have missed the point of my post -- the point of my post was not to debate the philosophy of Dr. Wahl's or the use of alternative therapies, (In fact, I should have removed the URL prior to posting) but to give yet another example of how sometimes others even though initially well-intentioned tend to give out unsolicited advice about what they think is best for use in terms of treating our disease when really we are the only ones who can decide what is best for us.

Sometimes people can be pushy, bold and downright arrogant as they tell us what we should and should not do. It can even come across as sounding like they are blaming us for getting ill or or for not getting well. There seems to be the implication that they somehow know more than us about our affliction and we know nothing. Do they not realize that when we receive such a devastating diagnosis that we are not going to do as much reading and research as possible and learn as much as we can about it?

If you love everything that Dr. Wahls does and follow her treatment program or whatever, great. I really don't care. I don't care of you subscribe to the philosophies of Dr. Wahls, Dr. Zhivago, or Dr. Suess! I could care less. It's none of my business, unless you want to share it with me! Your course of treatment is YOUR decision and it is not okay for someone to berate or shame you for your decisions! Those were the points that I was trying to make.
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198419_tn?1360245956
He's lucky you even responded to it. Scary where he says he's treated patients and writes papers on it (MS cure).......
Some people will believe anything, heck, some believe aliens built the pyramids too because humans couldn't do such things...really? lol! haha

Glad he's no longer on your fb, Oji, no one w/this disease needs people trying to "convince" them of theoretical cures.
-shell
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