Debate

[gp2778]

I would like some input on Vitamins versus DMD's. Since taking a DMD I had issues and I kept balming everything on MS. Dizziness, fatigue, vision, numbness, balance and a few other things. I was coping with the fact that I had MS and was starting to accept the new me.

Well four months into the DMD I had an exacerbation and had to be admitted. MRI showed 2 new lesions. The Neuro stopped the DMD and is ordering a new one for me to start in a month. Since I have been off the DMD alot of the issues are disappearing and I am starting to feel normal again.

I know the drugs have side affects and the steroids just given to me could also be helping me. I have been taking vitamins and I am starting to feel better. Right now I am stuck between a rock and a hard place because I am terrified to completely stop the DMD's because of not knowing the outcome of vitamins and long term affects of the disease.

It seems that every story I read about MS and vitamins it usually details someone that is functioning normal and have had it for 10 plus years with no problems. So the question is, is it really worth the risk? Is most of what I am reading a sales pitch? Did they only have one flare and will probably never have another one due to the course of their disease and they are giving testimony to vitamins actually making this happen?

MS is a difficult disease to practice any drugs on. I havent found any real solid evidence of vitamins and long term studies on them. Literally 25 plus years. I have also read many statements that the disease will progress later on. But I havent found any stories in this course of the disease while only taking vitamins and them slowing the progression. The only studies I have found are in conjunction with a DMD.

I know vitamins are good for you in some aspects and I am starting to witness it. But in the back of my mind I am scared to completely stop taking a DMD because of not knowing if the DMD will slow any progression vs only taking vitamins. Now I feel like I am gambling with this disease.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[SNOOPY]

Hi gp2778,

I have been diagnosed with MS 28 years with symptoms that go back to childhood.

I was diagnosed before there were DMDs and I have never used a DMD.

I use vitamins/supplements but I only really got into using them about 10 years ago. In general I feel better taking vitamins/supplements.

In the 10 years of using vitamins/supplements I honestly cannot say they have affected my MS one way or the other.

The only vitamin that I have seen any benefit from MS wise is Vitamin D3 (increase in strength and a decrease in fatigue) but I was/am D3 deficient.

Is most of what I am reading a sales pitch?

Possibly. Or it could simply be someone's perspective in their general well being since using vitamins.

But in the back of my mind I am scared to completely stop taking a DMD because of not knowing if the DMD will slow any progression vs only taking vitamins.

Vitamins, to the best of my knowledge will not slow progression. A DMD may or may not slow progression. Some who use a DMD do quite well, others still progress. Not taking a DMD can have the same results, some do well without DMD, others progress.

Exercise can possibly slow progression:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302199/

[mercadies25]

MY OPINION

This is my opinion and experience. I was a true believer of vitamins. Every day I would take a multi, e, and b12. For years every day. Well I also eat a pretty healthy diet. Lots of fish, veggies and fruits. I drink water, sugar-free juice and coffee. I still was sick, tired, weak and in pain all the time.

I still got ms, hypothyroidism, ra and suffer from depression.

The dmds SLOW the progression of the disease. I don't feel great and asked my doc. He said THERE IS NO CURE. I also now take meds for muscle spasms, pain, bladder etc....


I really think the only way the dmds work is with time. Every 6 months you should get an mri and hopefully you will not have any more lesions. That's what happen with me.

Do I like it? NO!! Do I know how much longer I'll do it? NO!
But if the choice is dmds or disability I stick with the dmds.

You should get your vitamins from the foods you eat. The docs can check your levels to see if you are low and need extra.

I did work for a vitamin company for awhile it is a multi-billion $ industry.

Good Luck to all.

[22cyclist]

gp2778: Not all DMDs are created equal when keeping exacerbations at bay. Depending on what medication you were taking you may have not been on a very strong helpful med that kept them at bay and in addition kept new lesions at bay.

Since you had 2 new lesions on this med, you probably should switch to a new medication that protects you better. You could do vitamins in addition to your dmd, but probably not instead of.

An example of what I am talking about:

Efficacy for preventing new exacerbations and new lesions:

Copaxone: 30%
Rebif: 30%
Avonex: 30%
Betaseron: 30%

Aubagio: 30%
Gilenya: 50%
Tecfidera: 50%

Tysabri: 80%

So choose your DMD wisely. I would then add the vitamins.

Take care
Lisa
Moderation Team

[Alicious]

It's complicated, and a personal choice, but here is my perspective.

I was on Copaxone for a year. I battled nausea the whole time. I switched to Rebif for six months, and the flu like side effects were brutal. I was then on Avonex for six months, until I started getting suicidal thoughts from it. I went off of Avonex (creepy thoughts went away, thankfully), and was no no DMD for about 4 months. For the first time in two years, I felt like me again. I didn't realize just how crappy the meds I had been on had made me feel until I was completely off of them.

After those 4 months I went on Aubagio, an then switched to Tecfidera because Aubagio was making my hair fall out. (I may have MS, but I'm keeping my hair. Harrumph.) Here's the thing--on Tecfidera, I feel like I do when I'm not taking any meds. It's not that DMDs make me feel like crap, it's that some do and some don't.

Every body is different, and what works for one person may not work for another. that's true for efficacy, and it's also true for side effects. So, vitamin vs DMDs? To me, there is not either or. It's both, all the way. I know the DMDs have a statistical probability of helping, something I don't have with vitamins. That being said, if the vitamins are of reasonable amounts and are done with my doctor's knowledge and input, I figure it's worth adding them to the mix.

Some people take nothing and do great. Some people take DMDs and do poorly. Some people swear vitamins do the trick, but all of these are anecdotes. For me, I want data, and while it may not be as rich as I'd like it to be, I'll take the data that supports DMD use any day of the week. And I take my vitamins.

[MSer102]

I know vitamins are good for you in some aspects and I am starting to witness it. But in the back of my mind I am scared to completely stop taking a DMD because of not knowing if the DMD will slow any progression vs only taking vitamins. Now I feel like I am gambling with this disease.

Vitamins are only one group of chemicals our bodies need to stay alive and stay healthy. So concentrating on vitamins alone will not keep anyone healthy or make them "healthier" or help with disease (unless the disease is caused by vitamin deficiency).

Bodies need good nutrition and that's a much more complicated subject. A properly fueled body has a better chance of staying healthy and healing after illness and injury. It looks like all of the people who say they have kept some of the worst effects of MS at bay or have even "triumphed over MS" have used excellent nutrition as part of their coping strategy. And that doesn't mean just vitamins. Dr. Joel Fuhrman has built his "soapbox" of lifetime health around micronutrients and phytonutrients so his books and TV shows are good places to start getting explanations of why they're important.

Some people with MS do well without DMD's and some people do badly no matter how many medicines they have tried so there is obviously something more than just medicines going on. And there is probably more than just nutrition going on. But researchers have found that what we eat and how we live can turn the expression of our genetic tendencies on and off. I'll bet that bad nutrition doesn't help anybody or any body deal with health conditions. And I think that focusing on only vitamins and ignoring the rest of the nutrients our bodies need can lead someone into bad and unbalanced nutrition.

So I think that only taking vitamins is not only gambling with MS it's gambling with health in general. On a foundation of excellent nutrition I think a person will be better able to tell if they can do OK without a DMD. I think our bodies decide that for us. But maybe we can give our bodies good support in doing that by giving them good total nutrition and not just selected vitamins or supplements.

[Seasha]

Well said, MSer102 Thank you.