Q: I do not want to take shots or do any medicines for MS. How possible is it to stay ahead of this condition without the meds made for it?
Kola,
Being diagnosed with yet another chronic condition does create new challenges in deciding how to manage the disease. Not know what your other conditions are, there is no way to predict how MS might work with or against the other health issues you may face.
The meds have shown to be effective for certain things and in a portion of the MS population. When I was first dx with MS, my neurologist encouraged me to begin injections which I did. Since then I have been dx with RA and at one point changed medications. When I changed, my neuro took me off the MS med because the RA med would help both. It really just depends upon your situation.
I have found that certain medications really do help specific health problems and allow me to live a healthier life as a result. But taking medications does not keep someone from focusing on maintaining a healthy life. Both are necessary.
It's such a personal decision between you and your doctor. If you have more specific questions, please feel free to ask.
I am a firm believer in avoiding as many toxins as possible, and that includes drugs, but that is my personal opinion only.
Please check out Dr. Terry Wahls......you can google her and/or find her on Facebook. She has overcome her MS and is doing well through several endeavors, all of which she has studied in depth, and has published papers, at least one book, and is currently heading a study which is still enrolling patients. (Look for "Minding My Mitochondria"her book)
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prayer helps.
Hi Kola Two Hearts,
I hear your concern and I know how you feel about taking so many meds. I was diagnosed 25 years ago when there were NO meds except steroids for an exacerbation or, as the doctors told me, rest (they don't tell me that anymore)! I looked forward to the day when there would be something, anything, out there to help me. When the day came I jumped on it. I tried Betaseron, Avonex and then, finally, Copaxone. I have been taking Copaxone now for 15 years and never looked back. It has helped me reduce the frequency of exacerbations I do have, and if I experience an exacerbation it shortens the amount of time I have them.
I also practice "Integrative Medicine" (see my prior post about what helped me after my diagnosis) which is a combination of traditional medicine with alternative. For me, it helps. Yoga, medications, vitamins, and de-stressing - this is how I can cope.
I don't know what "type" of MS you have (RRMS, PPMS, etc) so I can't tell you how you'd be without any meds (I am not a medical person) but I can tell you that I know MS silently continues on inside of the body even when, on the outside, we don't notice it! So, for me, I take Copaxone for extra protection.
Like Lisa Emrich said, we each have different medical issues and so I would say to speak to your neurologist to see if there are meds for you that also work for your other conditions.
Let us know how you are doing. I hope I've helped.
Best in health,
Cathy
Oops!
Kola, In my last post I spoke of integrative medicine and what I used. I said yoga and I meant to say MEDITATION (not medication!) vitamins and de-stressing. Sorry for the mistake!!
Again, I hope some of what I say, and what others say, in answer to your posting, helps you. We will keep this conversation going as long as you need to......
Best,
Cathy
I think you need to research every thing you can and make your decision based on what you think rather than what everyone tells you to do. I was diagnosed 2 years ago this April and my doctor immediately gave me an option of Copaxone or Avonex, no option of nothing. I was in such shock when I was diagnosed I chose Avonex and have been on it ever since. The thing that bugs me most about my decision is that I feel it's like "snake oil" because now I don't know if it's working on my body or if my body is just doing it's own thing. But I also don't want to stop taking it in case it is working. My health is great and I have been more active since I recovered from my symptoms. I am a real big believer in diet (organic, gluten free, low fat, lot's of fruits and vegetables, and very little sugar if any) once I started truly eating better I have felt great. Good luck in your research and hope you are well!
Hi Kola,
These decisions can be so difficult. How do you make a decision to be on a med for a disease with an uncertain course; always questioning how things would be if you weren't on it... and whether or not these injections are making a difference. Like Cathy, I was diagnosed in the late 80s when there were no DMDs. I started Copaxone in '93 while in its final stage of experimentation. Having gone 5 years without treatment I got to know (as if you can know...) how my MS would be. I had a list of what I couldn't do and it was clear how the Copaxone changed that. Three months in to it, I could walk far enough for my feet to hurt and I didn't have any episodes for a number of years. With the meds available immediately it's not so cut-and-dried.
As everyone said... It's a personal decision. I am on Rebif now as well as a billion other meds to treat the symptoms that have accumulated over 22.5 years with RRMS. I hate being on this many meds... but it would be so much worse if I had to endure the symptoms that they treat.
It's a trade-off that I have to remind myself of everyweek while I'm filling up my pill containers; a task that I truly loathe.
I'm not sure any of this helps, but when it comes down to it- having people who can relate to the struggle goes a long way. Another advance that I didn't have in 1988. For me, the basis for comparison shows there is a lot to be thankful for.
As everyone has also said... Keep us posted and good luck with your decision process. It can be a bear~
I learned about this HealthCentral.com post from Amy Gurewitz, who urged her Facebook friends who are also MS patients to leave comments here. Thanks to Amy, I too am urging my Facebook friends to do the same. (Many of my FB friends have MS, since my just-published book, HONEST MEDICINE, features a treatment that is often used successfully to treat MS. That treatment is Low Dose Naltrexone, or LDN.)
While doing the research for my book, I heard so many success stories about patients who used LDN and found it to be more efficacious and less toxic than the other drugs (C.R.A.B drugs and Tysabri, for instance) they had tried. I was impressed.
Two MS patients (Malcolm West and Linda Elsegood), one spouse of an MS patient (Mary Boyle Bradley), and one physician LDN advocate (Dr. David Gluck) all contributed chapters to HONEST MEDICINE. All four reported LDN to be more effective than the more conventional treatments.
I hope that more MS patients will learn about LDN. It is certainly less toxic and less expensive than the other MS drugs--and according to my chapter contributors, it is also very effective.
Thanks much.
Julia Schopick
Shannon: Thanks for commenting here. I hope LDN continues to help you. If you are concerned about the dose you are on, compounding pharmacist Skep Lenz in Boca Raton is an excellent resource. And please tell me how you like "Honest Medicine," after you've read it. Write to me at Julia@HonestMedicine.com. And again, thanks for commenting.
Julia Schopick
I was diagnosed 20 yrs ago, and I count myself lucky that there weren't meds available then. Instead, I discovered that diet and lifestyle changes made a profound difference. Over the last 15yrs I've faced a lot of pressure from doctors to try DMDs - until last year my MS nurse acknowledged "it looks like you're right about the drugs - they've been found to be about as effective as placebo."
From what I've heard from others who've had MS for a similar timespan, the ones who are doing best are the ones who eat healthily and try to maintain positivity - with or without meds.
(I'm still med-free and happy that that's right for me)
Good luck with finding YOUR best way through!
Thank you for your response. I feel lucky to have friends out there that are doing well without meds as that is what I want to do. Thank you
You make an excellent point. Too many people, including those on the DMDs AND those on Low Dose Naltrexone (which is not toxic and has hardly any side effects), do NOT acknowledge the influence of diet. Eating unprocessed, pure foods is so important. Good for you!
Julia Schopick
HonestMedicine.com
http://www.amazon.com/dp/product/0982969007/
I think that what needs to be acknowledged for everyone with MS is that we all have different needs like we all have MS differently. What is good and right for one person may not be for the next. The thing to do is honor and respect each other's opinions while doing what is best for ourselves.
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Thank you so very much. I feel there are too many Dr.s ready to jump on giving people meds for everything wrong. Then you have to play catch up for all the horrible side effects. I am not game for that.