neurologist recommendation?

[Margamer]

I was diagnosed with RRMS 2-1/2 years ago (after 2nd relapse, MRI showed many lesions), and I've eaten a vegan diet for the last 1-1/2 years. I feel great since I changed my diet and I've had no relapses.

I've been on Avonex for over two years but I personally attribute my good health to my diet, not the medicine.

Can anyone out there recommend a Cleveland area neurologist - or a neurologist anywhere, for that matter - who is open minded about the benefits of a plant-based diet and who will help me evaluate whether staying on Avonex is helpful or necessary?

My current neurologist thinks there is no scientific basis for any diet recommendations, and is unaware or skeptical about Dr. Swank's research, Collin Campbell's The China Study, etc.

[Sumanadevii]

I think any neuro worth his salt would never recomend a diet without the DMD's that help slow the progression of MS down.  Now it is possible that a neuro would go along with your diet plan as long as blood tests prove you are not deficient in any vitamins.

My personal opinion is if you like the foods you are eating and no harm is being done to your body..go for it.  Just stay on the DMD so damage of this monster MS is not slowly taking away your ability to live life to the fullest.

[Emily_MHManager]

Hi there -

Briefly, if they have been recently responded to, they will be bumped to the top and sorted by date of last response.

If it's not that, can you send me a PM so we don't take this thread over more lol?  Thanks!

Emily

[Sidesteps]

Errrr, I mean, old threads... They are old new threads. LOL ~

[Sidesteps]

Emily,

This is probably not the place to post this but I have noticed on my mobile application that these new threads are popping up to the top.... I have nearly posted on them myself only to realize it appeared to be a glitch and no one had posted yet.

I noticed it started about 3 or 4 weeks ago. It is happening far more than it has previously as well. Could you look into that? I'm not a tech guru but I had noticed it as well.

~SS

[Emily_MHManager]

Hi Jujuminx -

We don't do anything to promote any thread.  They only come back up if someone responds to them.

Many times what happens is that someone is searching Google for something (say, MS and diet, in this example), gets a thread from MH in the result, and decides to respond.

We welcome all responses, no matter how old the thread is.

Emily

[jujuminx]

Wow, just realized after posting that this is a somewhat old thread...Still good info to read and think about but I am thinking perhaps the back and forth it not helping the original poster.

This new Medhelp format I think promotes older threads like this to get play that normally wouldn't.

Julie

[jujuminx]

Alrighty then ladies. Moving on....

I am sorry I cannot recommend a good neuro in your area but would like to add my two cents to this discussion.

Eating a clean, low fat, healthy diet does wonders for our mind and body but as far as being reponsible for putting anyone into an MS remission and keeping them there, that is pure folly.

Even Swank himself said that his diet was not a replacement for MS drugs and other ways to attempt to control the progression of the disease! This is often overlooked or not mentioned by people posting in this forum about his diet.

As most everyone has pretty much said, there aren't "proven" studies that diet can slow the progression of MS. Yes, there is some compelling anecdotal evidence that it MAY help but why wouldn't you use all the weapons to fight MS instead of  relying on only one that is not proven.

I am not saying don't follow whatever diet you feel "works" for you, but to take yourself off dmd's is in my opinion a very dangerous decision.

Many months ago when a similar post was made, someone posted that they had gone into remission with their MS (not a real accurate term) while on dmd's and decided that everything else they were doing was responsible not the dmd's so they stopped their medicine.

Years later her MS progressed and she was kicking herself for stopping the meds.  MS can progress without any symptoms so just b/c you feel alright doesn't mean your MS isn't progressing.

Heck, there are posters in here from time to time that are on dmd's and haven't changed a thing in their lives other than take dmd's and want to stop b/c how do they know the dmd's are really to be credited in keeping them in remission. Really.

I am one who's MS has remitting for long periods of time (up to 10 yrs). Those times I did not eat vegan, low fat, etc but simply a normal well balanced diet and I wasn't on dmd's b/c they either weren't available and/or if they were I didn't know I had MS. Last year after my relapse and my dx I tried the Swank diet, which I found very healthy.

I no longer consider myself on the Swank diet but I am not a huge meat eater and I do watch my fat and stay away from dairy b/c it doesn't agree with me.

My MS sx are non existent but I know from past experience that this has nothing to do with my diet and may have nothing to do with the copaxone I am on.  It may just be the "type" of MS I have and my genetic lottery that has enabled my body to fight off the normal progression of MS.

Whatever it is, I refuse to give up the precious drugs that were not available to MS sufferer's just 20 yrs ago. If you look at the statistics of the effectiveness of the drugs and the improved quality of life and increased life expectancy of people with MS, it's hard not to see a correlation between the drugs and our improved/lengthened quality of life.

I totally understand to feel like you are in control of something that you don't have control over.  Hum, if I just eat this or stay away from that, my MS will be kept at bay and I can lead a normal life. Ah, I wish it were true.

So for me, I eat healthy but also take my drugs b/c in truth I don't know what's really working or just getting credit for working. But if something is "working", why would I or anyone else change it?  

So, I say good luck to you. Sincerely, good luck. And for you sake I hope that your guess that it's the diet and not the drugs.  It's a huge gamble, but yours to take.

Julie

[ccorina]

In the interest of honest reporting - I should also state that I am an obvious example where diet and lifestyle have been ineffective.

I was the example of healthy lifestyle - vegan, personal trainer.

I am now a lump in pain who spends whole days in bed.

Corina

[SarahL2491]

throw in my kidney stone diet and it takes out half of the swank diet, sigh,
think maybe all in moderation might work

[Scarlett7]

I went on the Swank Diet within a month of diagnosis, I also started Copaxone within a month.  I've read Swanks books and McDougall's regarding a vegan diet and MS.  I am now looking for a neurologist who will work with me to get off the drugs as well.  In the intern, I plan to go to McDougall's 10 retreat in California in which he will teach you the ways of his diet and become your referring doctor and become the middleman between you and your current neurologist.  If you do find someone more open minded, please post their name.

Another good book to read is Overcoming MS by George Jelinek - another diet approach by a doctor who has MS and is off MS drugs.

Thanks!

[supermum_ms]

I'm a total believer in the negative vs beneficial health effects of food and chemicals that people are exposed too but having said this, i would have to be classed as a skeptic when it comes to 'MS' cures or cures of any disease holey and solely based on a specific diet. The problem i have with accepting 'diet' is simple, if I weigh up all the evidence, anacdotal and what studies there are. I still find there are too many holes and my mind keeps coming up with what about this and what about that, all unfortunately negate the possibility of diet alone being correct.

Believe me when i say "I just wish it were true" cause I would not hesitate, I have no concerns about going against convensional theory when it comes to diet, some of my family still incorrectly believe i changed the course of or even cured my son of Autism, mainly because of changing his diet. The problem with that mind set, is it excludes all the other things that were also in play, no one can with 100% conviction prove (even to me) that diet 'cured' him. If it were true, I would be rich beyond belief! lol I wish!

So why do I with a significant personal understanding of what diet can do, still be such a skeptic when it comes to diet and MS or diet and Cancer or diet and Autism etc. Well from my perspective as I've already said it simply comes down to all the other things that are also at play, my what abouts. Some of which are.........

- MS is unique to the individual, no two people experience exactly the same course so it isn't possible to predict with 100% acuracy, who will in fact end up in a wheel chair and who wont. I suppose the only thing you can say is that to do nothing at all, will more likely get you there quicker.

- Brain plasticity, (my strongest belief todate) what you do, how you do, when you do and the success or failure is unique to your brains ability to rewire, though even then there is a limit to what can be achieved.

- Drugs, any medication of any kind that is taken for sx or DMD's will interfere with the possibility of diet being solely responsible.

I'll leave it there because with having many other's I could write a book but you should get an idea of where i'm coming from. MS unfortunately like Autism isn't fully understood, the why is still unknown, and maybe one day soon we will know. I should whilst being honest, express my concern regarding 'hardliner's of diet is the cure of xxx' not that i'm saying you are but there are many out there who's conviction doesn't allow for any alternative, though its probably more evident in the world of Autism than it is for MS.

My concern is for those people who will for go all other available treatments in the hope that the natural way alone will help them, when it comes to mysteriously destructive diseases like MS, it is a gamble not worth taking, too hard to un-ring that bell. I live by the theory of first do no harm and second do what ever it takes, so with that in mind i hope if anyone is thinking of going down the road of diet that they double their odds and not throw out the science, do both it can't hurt!

Cheers...............JJ
  

[COBOB]

There is a lot of anecdotal evidence, and very little peer reviewed scientific evidence and that is the issue.  Most diet studies are not designed, double blinded, mixed cohort, sham controlled studies.  They are open label basic science studies.  Basic science studies are the first step, but you can not make causal relationships or statistical claims based on basic science studies. Improving diet has not been scientifically proven to change the course of RRMS because no one has proven a causal relationship between diet and MS.  They have been trying to show D3 and B12 as causal factors for years, and have not been able to do that..

This has been an issue that has been hashed through this forum several times and seems to make a return trip every couple of months.  

Bob

[Margamer]

And Red, thanks for the suggestion - I hadn't searched using the word "holistic" and now I'm finding lots of info.

[Margamer]

There actually is a lot of scientific evidence demonstrating the benefits of a plant-based diet for MS and other diseases - if you have not read The China Study by Collin Campbell, I strongly recommend it. It is not based on anecdotes or how the author "feels," like some of these books. It is a compilation of scientific research that is very readable.

My Mellen Clinic neruo also thinks there's no evidence a diet can help, but that's not true. I wish he had been able to tell me about this when I was diagnosed, but he does not have this information.

Lulu, I wonder what you're referring to when you say "all the diets have been tested and they do not hold water." There is a controlled clinical study underway at the University of Oregon now, where Swank practiced, to study the effects of a plant-based diet on MS, so we'll have that data soon. Swank did not use controls, but asked all of his patients - beginning in 1948 - to eat a diet low in animal fat - the ones who followed his diet did not become disabled but the others did. Despite the lack of placebos or controls, I think Swank's research is compelling, and Campbell's book is as well.

[essdipity]

There are quite a few reasons for maintaining a particular diet---religion, ethics and health issues being the biggest ones. If you are feeling well and your overall testing is normal following vegan principles, that's great. You must be meeting all your nutritional needs, and if not, it's easy to find out where you may be lacking.

If your MS doctor also has no probs with your diet, all the better. The only issue, then, is cause and effect. There is NO scientific proof that your diet is having a beneficial effect on your disease. This is a very risky area to take chances with. So why not just continue your lifestyle and your Avonex?

I myself have done very well on Avonex for going on three years, and I am an omnivore (sometimes to excess, I'm afraid). Possibly you and I are just both lucky, but I'm not taking any chances. Avonex has been shown to help statistically, and why shouldn't we be in that cohort?

Whatever you decide, you are more than welcome here.

ess

[Lulu54]

Hi and welcome.

there are a number of good neurologists in the Cleveland area, including the Mellen Clinic at CC.  

The problem with finding one who will agree with the use of diet to control MS is there is absolutely NO evidence to prove it works.  All of the diets have been studied repeatedly and in a controlled environment they do not hold water.  None of the diets work for the purpose of controlling MS.  

As for lifestyle differences though, eating healthy is never a bad idea.  The less processed foods we eat, the better we are going to feel.  The healthier we feed ourselves, the better our heart, brain and other organs function.  It is all part of a bigger picture of tring to do the right things to keep us healthy.

But for the idea of diet as a therapy for MS - To use your example - first you have relapsing remitting MS, which is known to go into remissions for long periods of time, even without the use of drug therapy.  How do you know if you are in remission from the disease or better because of the diet or the avonex?  You can't know that because you haven't studied it in a controlled environment.

You could evaluate whether the Avonex is working by stopping the drug competely and then waiting to see if your MS progresses.  The problem with that is any disabilities you might accrue while trying this approach will usually be non-reversible.  That's a chance you might not be willing to take, so please talk this over with your doctors and get a clear idea.

good luck and I hope we'll see you around,
Lulu

[RedFlame]

Glad to hear how well you are doing and that you have been in remission for 2 years.  

Sometimes when when a person takes a prescribed medication for a lengthy period os time they believe that their improved health has healed or otherwise resolved.  Too often though, the medication is stopped and the person becomes ill again.  

I'm not a doctor of course but hope you don't take yourself off something that is helping you.  

I don't know much about relapsing-remitting type of MS, I do know I would take anything if it worked for what I have.  

I googled 'neurologists that practice holistic medicine' and came up with thousands.  You might start there.

Red