
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.

deleted_user
I am looking for some feedback regarding alternative treatments for MS vs. the meds that are out there for MS. I have never taken any of the MS drugs because the side effects for me personally seemed to outweigh the effects of MS. Three years ago I did the 50 mile challenge walk for the National MS Society and it seemed that everyone that was there was on some type of treatment except me. I felt like an outsider. Is there something wrong with not wanting to take these drugs? I have done serveral things over the last 7 years with just one excerabation where I needed to be put on Solumedrol for 5 days. Other than that I do take supplements, watch my diet and work out as much as possible and meditate daily. Just looking for your thoughts.
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I think allopathic treatments hold promise, and for those who aren't inclined to look into "alternative" treatments, they can be empowering, as you're at least doing something to reduce your relapse rate and disease progression, even if it's only by 30%.
I use a combination -- Novantrone (and soon, Rebif) as well as supplementing with essential fatty acids, CoQ10, and B vitamins. I use reiki and massage to help with symptoms, and do adaptive yoga to stay limber.
MS affects us so differently, that you may be one who simply has mild disease regardless of treatment. It doesn't mean that alternative treatment is working for you -- but neither does it mean that such treatment has been ineffective. That's why it is so hard to judge whether treatments, whether alternative or otherwise, truly work. You have to study this over time in highly controlled environments, and most people aren't willing to do that.
Just my opinion! :)
-Karen
I personally have used Betaseron, Avonex, then Novantrone which was my most effective and comfortable to date but you can only take it for 2 years. then I took Copoxone for 4 yrs. I never tried rebif and have just started Tysabri. MS while many symptoms are the same or similar each of us have a different path and react to what meds we are on differently. If you find something that works well for you go with it till it stops. Then transition into something else, it is easy to get intimidated but go with what works for you. at least thats my opinion.
RobinS
As far as the Copaxone goes, I figure it has minimal side-effects and if I get older and more disabled and didn't take an FDA approved drug, I'd probably regret it. I'm glad I can take the one that seems to have the least side effects with the same effectiveness as the Interferon drugs (Copaxone).
I also take LDN (http://www.lowdosenaltrexone.org) which is relatively cheap (less than $23/mo) and a pill with no side-effects but has no FDA approval for MS (is FDA approved)
Larry
Remember, regardless of what people have said here, the only proven benefit of the ABCR drugs is to reduce the chance of you having an exascerbation. There is nothing but anecdotal evidence that they make you feel better, some made me feel worse.
I'd hate to lose more function than I have and know I could have been taking a proven preventative. I'm very grateful that I get patient assistence. I'm also grateful for finding LDN but I am also taking a drug that is proven to have some affect on this disease.
I don't think it hurts to do everything to prevent progression of this disease (except I'll no longer do Novantrone and risk getting a hole in my heart!). I think avoiding stress, watching diet, doing as much to remain fit as I can is prudent (and for me taking LDN, as my PCP said, "well it can't hurt you".
I wish you good-luck in whichever way you attack this MonSter!
Larry
I read just recently that another alternative approach would be a metal and colon cleanse. I am not sure if i am going to do that yet, but... maybe someday.. ya never know.
I hate putting anti-biotics into my body... but... i think it has to be done to treat this disease.
I hope i helped alittle?
I take 3.0 MG. Tried the 4.5 but didn't like it, 3.0 is was much better.. and it's only $15/month, not $23.
When I was DX'd 5 years ago I had refused the CRABs, 3 months after my DX I Heard about LDN, and 6 months later I was taking it.
http://www.larrygc.com/mystory is my early days journal tread on my ezboard
:)
My Neuro is even prescribing it now if a patient asks him for it (that is a major shift for him from thinking I was doing some quack treatment).
I try to eat healthy (low fat) and I do acupuncture and all I can say about LDN is that I haven't had an exacerbation in the 2 1/2 years that I've been taking it. I figure that and its low price is enough.
Larry
http://www.lowdosenaltrexone.org/#How_can_I_obtain_LDN
You shouldn't be using any of the Interferon drugs if you use LDN (I don't think there are ill effects, just makes the interferon drugs ineffective). So you'll want to be using Copaxone if you want to take LDN.
My experience is that the doctor may try to talk you out of switching to Copaxone but there is NO evidence that the Interferon drugs are more effective than Copaxone (according to the FDA approved studies).
I use Skip's Pharmacy. Skip is a BIG advocate for LDN (if that matters).