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-   -   Question about MS meds/vitamins (https://www.neurotalk.org/multiple-sclerosis/151321-question-ms-meds-vitamins.html)

californiafriend 06-03-2011 11:53 AM

Question about MS meds/vitamins
 
Hi everyone,
I was just looking into the different MS medications as well as the vitamin approach without meds and I wanted to know if anyone knew what has actually proven to work more?
I was also wondering why after 10 years of having MS the risk of disability or progression increases? Is this true even after taking the medications for 10 years? Have the medications been around long enough to be able to differentiate whether you had a liklihood of progressing after ten years with or without the meds?
I personally just feel like there is soo much money in the pharmaceutical industry that so much information could be left out or fudged. Im not saying that everythings some big conspiracy or anything lol im just saying that when billions of dollars are at stake i doubt a cure or a medication that you dont have to take for the rest of your life is going to be found.
I know that there is a big "contriversy" about the CCSVI treatment but i dont understand why thats so contriviersial. Whats so contriversial about unblocking a vein that is blocked regardless of whether you have MS or not? And if many people have experienced an improvment in their functions and abilities because of the unblockage why arent more people looking to do that? The risks to me dont seem even close to reasonable to put off.
But anyways thanks for letting me babble and ask a million questions lol Any comments or info would be great! :) And please please please keep me in your prayers that my MRI/spinal tap comes out clean :)

Kitty 06-03-2011 12:13 PM

Praying for a good result from your LP and MRI. :smileypray:

I'm of the opinion that it's completely based on your own personal body chemistry. Some folks have good results with the traditional DMD's. They don't have many (or any) side effects and remain stable or even improve. Others, however, cannot tolerate the DMD's and have severe side effects along with little or no improvement or stability. No one thing works for everyone.

For me, I did give the DMD's a try. One was an interferon (Beta) and one was Copaxone. I could not tolerate either. And, I was progressing while on them.

So, I decided that I didn't want to live like that and started researching on my own. My Neuro didn't seem interested in alternative treatments or even supplements so I did it without his help.

I've found that by me taking LDN, cleaning up my diet, and taking a strict regimen of specific supplements I have stabalized quite well. I still have some sx and still have my days that I don't feel well......but nothing like I was when on the DMD's.

I think anything you can do to improve your overall health - MS or not - is a good thing. Everyone has to be their own advocate and work to find what works best for them. Everyone is different. But I agree with you that there is no rush to find a cure or even a better drug to treat the symptoms. There's too much money to be made in keeping it just out of our reach. :rolleyes:

californiafriend 06-03-2011 01:50 PM

Thanks so much for the quick reply and all the information :) Did you ever try the tysabri? I dont know much about LDN..is it considered a medicine just like the Copaxone/tysabri etc.?
Is LDN kind of like a sedative/opiat? Is that why it keeps things in remission more? Do you mind me asking what kind of symptoms you were having with the medications and the ones you are having now without them?
Thanks for bearing with all my questions im really scared and trying to figure out how to deal with things once/if i get a definite diagnoses and thanks again for your prayers :hug:

Kitty 06-03-2011 02:10 PM

No, I never tried Ty. It just had too many unknowns and too many risks for me. There are many here, however, that have had wonderful results with it.

The side effects I had with the Beta was injection site reactions, flu like symptoms that never eased up with continued use and progression showing on my MRI's.

With Copaxone I had the same injection site reactions but no flu like symptoms. My site reactions were worse than with the Beta and my MRI's still showed new lesions.

My MS symptoms were varied but the worst were numbness, dizziness, vision issues and fatigue.

I still get MS symptoms from time to time but not like I did while on the DMD's. If I get overheated or have some sort of infection (cold or UTI or something like that) then I get very off-balance. It's one of the first MS symptoms to overtake me when I overdo or otherwise don't feel well. Numbness, to a degree, is always there but it's gotten much less bothersome since I've been taking LDN.

I had read about LDN here on this forum and, even though my Neuro would not write me a prescription for it, I found a doctor who would and have been on it ever since.

Here is a website that gives good info about LDN: www.lowdosenaltrexone.com.

I cleaned up my diet and started taking supplements and that, along with LDN, has really helped me personally. Everyone has to find the right balance of meds and healthy lifestyle. For me, the less meds the better.


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