So I guess this is my intro... I am receptive to any advice!

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brnsug0945
New Member


Date Joined Jan 2011
Total Posts : 17
   Posted 1/13/2011 7:14 PM (GMT -6)   
I was diagnosed 10 years ago.  I was 18.  "You have MS, you're goona go blind, you're gonna die."  No one believes that a doctor said that but it is the truth!  My first response was that I was going to have a baby.  I vaguely remember that.  My mom reminds me of it sometimes. 
 
I got pregnant 4 months later.  (I have a son.  He's 9 now)  My symptoms subsided and I just about forgot I had the disease.  I started Copaxone when I was about 21.  I started losing my balance.  I was fit for Canadian crutches when I was 22.  I broke my ankle when I was 23 and it took 6 months to heal.  While on the Copaxone, I didn't tolerate it well.  My hair was really greasy and I lost it in chunks and would fall asleep if I sat too long.  I started to grow facial hair.
 
I opted to stop all medication 4 years ago.  I decided to go Holistic/Organic.  My brothers think I am weird.  I felt better.  My hair grew back and the facial hair went away. 
 
Now as the disease has progressed, it was suggested that I join some sort of forum. 
 
I have stopped driving and am pretty much wheel-chair bound.  I am confident in my decision to stop medication but am having some difficulty keeping hope alive as I live with this disease.  I don't like it and wouldn't wish it on my worst enemy!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 1/15/2011 5:41 PM (GMT -6)   
Hi brnsug,
 
Welcome to the forum.  I am sorry you didn't have success with copaxone.  I am glad you are feeling better with holistic medicine and diet.  I hope things stay steady for you.
 
I don't have any advice.  You are far more experienced with this than I am.  Please share your wisdom as you see fit.  We are glad to have you here.

brnsug0945
New Member


Date Joined Jan 2011
Total Posts : 17
   Posted 1/20/2011 4:27 PM (GMT -6)   
I think it was too bad Copaxone didn't work out as well. It has for=ced me to seek other avenues.

It's Jennifer by the way. Thanks for the welcome. Even though I have had MS for so long, ttalking about it is new to me.

Mommyof5
New Member


Date Joined Feb 2011
Total Posts : 5
   Posted 2/2/2011 6:27 PM (GMT -6)   
I am new too. I was diagnosed 10 years ago when I was 27, but can date my optic neuritis back 15 years. I was wondering what you are doing holistically? Myself, I have never started any sort of therapy but I am experiencing new and worsening symptoms and would like some advice on what is working for you. I am a vegetarian and noticed when I ate total vegan my symptoms were much better. You thoughts and advice are appreciated.

brnsug0945
New Member


Date Joined Jan 2011
Total Posts : 17
   Posted 2/2/2011 6:58 PM (GMT -6)   
Hi Mommy of5!  It's Jennifer (brnsug0945).
 
I had optic neuritis when I was pregnant and there was nothing to do about it. 
 
Let's see... what do I eat?  Well, I do a South Beach diet.  Low in carbs (they make me feel lethargic).  My doc has me on low argenine and high lysine.  He also has me on a slew of supplements.  I take LOTS of essential oils.  Cod liver oil, evening prim rose oil, Vitamin D, Black currant.  I think of myself as the Tin Man and I need to be lubed up.  They make me feel better.  I also drink whole milk but seeing that you are vegan, that won't work.  I guess that is the Vitamin D.  I am in Michigan and Hispanic so I need it but am robbed of the sun most of the time. 
 
I stay away from peanuts, soy, and cashews I newly realized.  I am not vegan but sometimes I lean that way (usually in the summer) the thought of ingesting meat makes me sick! 
 
Sometimes all of this seems too much and I give up in a way.  I eat whatever and I usually pay for it.  I would just try things and if you feel tired or "burny" as I call it.  Delete it from your diet.  Hence minus the cashews. 
 
I take it from your name you have children? I have a son and that makes things a little difficult when it comes to cooking.  He loves raw spinach though! 
 
Let me think and I will get back to you.  The oils are big for me, low carbs, I also take an L-lysine supplement as well. 

Mommyof5
New Member


Date Joined Feb 2011
Total Posts : 5
   Posted 2/2/2011 7:22 PM (GMT -6)   
Thanks for the reply. I am not vegan but I find that it pretty much decreases my symptoms. I am a vegetarian. Yes, I have 5 children diagnosed between the third and fouth. I live a high stress life too. Thanks again.

brnsug0945
New Member


Date Joined Jan 2011
Total Posts : 17
   Posted 2/2/2011 7:38 PM (GMT -6)   
I've heard that meditation or yoga helps as well with the symptoms and stress level.

I stink at meditation though...

I also do natural cleaners and free and clear laundry detergent and dish soap. That helps. Smells can be an irritant for me.
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