Trying to stay natural with MS treatment - can it be done?!?

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EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/8/2009 8:16 AM (GMT -7)   
Hey,
Have had RRMS for 18 years. Have been able to stay off meds with increased disability but very satisfied with no side effects and still good quality of life!!!! Is there anybody out there who is like me, trying to cling to the no med thing at all costs or am I just a hard head smilewinkgrin who needs to get over it and realize that there comes a time when you just can't do it anymore? Thanks for any help!!!!

Peace,
Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/8/2009 9:04 AM (GMT -7)   

Hey Elizabeth,

First let me say, I am enjoying your posts and I am so glad you are here.  I have only had this disease for a few years.  I am a total rookie compared to you.  I am guessing you were not offered meds when you were first diagnosed as they weren't available.  As meds came available you may have avoided them as you were feeling pretty good about managing those MS issues.  If you have done this for 18 years, I would think you are doing just fine!  Rememeber this, with or without drugs, this disease progresses.  You are at a very typical age for your RRMS to transition to SPMS.  Once you get to that stage, the meds aren't really going to help.  Most doctors at that point take you off the meds as they are not longer helping.  So if you think about it like that, you might as well stay the course.  Talk to your doctor and see what he or she recommends. 

It takes discipline to do this the way you have.  There is no guarantee that you would have done better on meds.  No ones knows these things yet. 

My doctor wanted me on meds right away and pushed hard for that.  I went with that but I also have made changes in my life style as well.  I am at the beginning of my MS journey and it is way too early to say whether my choices will pay off with decent quality of life at the 18 year mark. 

Well, that is my two cents worth.  I really don't know if my post was any help at all but I felt compelled to respond. 



Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/8/2009 9:38 AM (GMT -7)   
Thanks Gretchen!!!!
Your words were very insightful !!!! It is always helpful especially for those of us "longtimers" to be reminded how well we are doing during down times. It is so easy to lose sight of that. I have fought long and hard to remain med free and I do believe for me it has been the best option and I continue to believe that even with this increase in symptoms. All the info I can get will be helpful in the decision making process. Thanks for taking the time to give me your input! :-)
As you are beginning your journey know that I will be happy to help in any way that I can!!!!

Be cool,
Elizabeth yeah
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/8/2009 12:15 PM (GMT -7)   
I do believe that believing is 90 % of the battle!!  If you truly believe in what you are doing then it is!!!  Keep believing your efforts and keep doing your homework on new stuff you can add to your strategies.  You are doing great!

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 3/11/2009 6:54 AM (GMT -7)   
you might find a book i was referred to by an ms patient:

"reversing multiple sclerosis" by Pepe & Hammond

the person i met used this book religiously. has to do with diet, vitamins, supplements and alternative treatments. i found the approach way too restrictive for me. .. can't quite quit chocolate! another friend of mine is controlling her ms through diet and chinese medicine. hey, do whatever works, right? my ivig is keeping my ms under control and will continue until insurance rejects claims. linda

Dave_NC
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 3/12/2009 9:42 AM (GMT -7)   
EBullins I am taking the completely natural approach as well. Although I am new to MS (coming up on 6 month after dx'd) I am seeing great benefit it what I am doing. I have been engrossed with learning all I can on diet, supplements, vitamins etc. Fortunately I had a nutritionists before my onset of MS and everyone including my neuro are willing to work together to help me on my quest. There are ALOT of great books out there.

Books Finished:
The Multiple Sclerosis Diet Book
Taking Control of Multiple Sclerosis
The MS Recovery Diet
Exercises for Multiple Sclerosis
Complementary and Alternative Medicine and Multiple Sclerosis

Reading:
Curing the Incurable - Jacque C. Rigg

To read list:
Healing Multiple Sclerosis: Diet, Detox & Nutritional Makeover for Total Recovery - Ann Boroch

I have started a facebook group called Natural approaches to Multiple Sclerosis if you are interested(http://www.facebook.com/group.php?gid=50946478346). For what I am personally doing I have a blog online at http://mylifewms.blogspot.com/ with my complete story from day one back n August 2008.

Good luck with what you are doing!
Learning and living everyday to the fullest. My MS blog http://mylifewms.blogspot.com/

Post Edited (Dave_NC) : 3/12/2009 10:51:06 AM (GMT-6)


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/13/2009 6:11 AM (GMT -7)   
Thanks Dave!!!! The disease still progresses but I am fortunate after 18 years that I can stand and walk some and only have to use the wheelchair for outings. It is so nice to not have to deal with the medication side effects even if dealing with the symptoms without anything can at times be torturous. For me the natural way has always been the best even with exacerbations. Appreciate all the info and good luck to you as well. Let me know if I can help you also. :-)

Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 3/23/2009 12:45 AM (GMT -7)   
Hey Elizabeth,

I too do the natural thing. Have had MS for 50 years & I am pleased that I was not put on drugs at 10. I had 4 attacks between 10 & 45 and had a good life skiing, travelling etc. Have been SPMS the last 13 years but am still walking though with a cane. There are alternative things you can do if you wish & I do think diet, supplements, accupuncture & chinese herbs are all worth trying.

Good luck.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream

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