The Mystery Journey~Multiple Sclerosis

Hi my name is Donna and I have multiple sclerosis.  I am 49 years old.  Have a husband and three grown children.  I was officially diagnosed with MS in Dec. of 2004 but we all know it is there long before the diagnoses.  I started with a blurry eye in March of 2004 and with my allergy problems figured it might just be that, but as time went on it didn't improve.  So by June I was going to the eye doctor.  He couldn't figure out what was wrong with me and was rather nasty about it.  So I found another eye doctor and he figured out I had optic neuritis and knowing that my sister had MS decided I should have an MRI.  I went for the MRI, which I despised and then the radiologists decided that the lesions on my brain looked a bit suspicious. So my eye doctor sent me to a neurologists.  All of my reflexes checked out so the neurologists decided I had to have a spinal...that was worse then the MRI....cause the doctor had to stick me so many times to find the correct place.  I had all kinds of blood work done as well.  Well the the spinal fluid came back as fitting the profile for MS.  Yay!  for me!  huh?  I sat there and the neurologists said, "you don't look very upset about this".  What did he want me to do?  Fall out of my chair and grab is leg and scream at the top of my lungs?!!  LOL!  I apologize if any of you did that!  It is okay!  I just didn't!  I had prayed long about this diagnoses before, and I knew God was with me, no matter what. Not to mention, I kind of suspected I had MS because the summer of 2004 sent sensations through my body I had never felt.  Flushing, weak legs, blind left eye, arms tingling, dizziness, falling on my butt....and it goes on.   So from there it was which CRAB would I start on.  Doctor wanted me on Avonex...but I wasn't going there...so BetaSeron B it was.  For almost a year I continued on with BetaSeron and it seemed to work okay but in Dec. of 2005 my right side went completely numb.  I was limping around.  And my left leg thought it wanted to join in!  It never matched my right leg in its numbness. Anyway,   I figured this, it has only been a year and this has happened.  Even though I didn't have but one bad flu reaction, as in curled up in the bed in the fetal position, I didn't have to take Tylenol before the BetaSeron, to head off possible side effects.   I was sick of the swollen injection sites in my legs, arms and wherever, and the bruises and hurting every other day.  But it really wasn't about the shots at all.  It was about finding a better way!  It depressed me, I was anxious, made me hyper and people noticed how hyper I was too.  Not to mention the possible liver damage and numberous other possibilities of damage it could do to my body.   Well, about this time a good friend of mine was having his own problems and he had learned about this drug called "low dose naltrexone".  It is written off label for MS though, but is FDA approved.  As I tried to recover from my numb side and researched LDN,  the more I liked and trusted what I read.  I had to try this!  I researched it for six months before trying it (as you should all do) and had to search for a doctor to prescribe it for me in that same time period.    I found that doctor to prescribe LDN and have been on it 9 months now.  I am doing really well and have had no adverse reactions.  The first night I no longer had the urgency to urinate anymore.  Amazing!  I am so thankful I have given LDN a try and my friend told me about it.  I knew I could always go back to the shots if I had to.  Low Dose Naltrexone has made a big difference in my life, just knowing it doesn't have the awful side effects, I have a little more peace of mind.  Having MS is  challenge enough, so why choose a drug that could add even more problems on me.   Oh, and the cost of LDN is between $20 and $40 dollars a month and most insurance companies will pay.  Most important though, it is working for me.  It is my life, my battle and my MS.  I knew I had to try a better way.  I pray and hope this helps someone in their journey with this mysterious disease.  So different for all of us but the same.  Never forget that we all need each other. Live, Love and Laugh,  and Stay Strong!  Peace, Donna

Self-pity is our worst enemy and if we yield to it, we can never do anything wise in this world.
Helen Keller

Hello All,  I have this site about LDN and MS and figured I should be telling you how I am doing, now that I am going into month seven.  It seems I was just studying up on LDN and fighting for my chance on it and seven months has already passed! 

It takes six months for LDN to fully kick in.  Now that I am a week away from my 7th month I am fully there!   First I have to tell you I am a mild case of MS. I feel I was the perfect candidate for LDN....... Recently DX and pretty mild.  LDN stops the progression not merely slows it...so see why I feel I was perfect....not a lot of damage had occured in me yet...so........Well, anyway I was mild, other then the fact my right side did go completely numb in Dec. 2005 and my left leg tried to join,  and the optic neuritis hasn't fully recovered.  But my pheriphal vision in my left eye is now 100% correct.  My eye doctor can not believe the improvement in the past 10 months.  I said to him, LDN?, he said, well the proof is in the pudding, and I said, I am the pudding....so start calling me puddin!  He laughed.  And he is amazed! Now the straight on vision is still coming.  Take to mind, 7 out of those ten months I have been on LDN and remember I was recovering from my flare-up as well.  By April my side was pretty normal again, probably March,  the body heals itself, it does....but the eye was still struggling from Dec. 2004,  and there was no marked improvement until LDN!  I believe.  I believe the LDN has corrected my eye! 

My overall well being is most affected.  I don't worry about the side affects that the traditionally MS drugs said could happen.  Not concerned about possible liver damage.  I honestly can say I feel I am on my second notch up on feel good!  My opinion....if you are in an emotional uproar, then your spirit is going to be affected and from that your physical health! 

The hyperness, anxiety, depression and just that underlying yuck feeling is gone, now that I am on LDN.  I didn't feel good on BetaSeron,  I was never sure what it was really doing to me....I mean there was a list of possibilities a mile long, you all know that list, but God only knew what else.   With LDN, because of the low dose...there are no damaging side affects.   That gives me peace of mine, and from that less stress concerning my physical health. Oh, and that depression, anxiety and hyperness left after off the Beta. And I was on Lexapro to control some of the depression, anxiety and hyperness while on the BetaSeron...I am off of the Lexapro now!  So one more pill not to take.  Yippee! 

Well, I guess that is about it.  Sure hope all of you are staying healthy!  Some day a cure!  Day by day, moment by moment.  Just think as each moment passes, closer to a cure!  Remember, we are all in this together!  Always!  All are important and all of you are needed to help the other through this.  Hello, I am here!  :O)

I thank you for all of your support on this site.  And my prayer is it is doing it's job in helping so many!   Stay Strong!  donna

Tonight at church,  a lady that I don't usually sit by was talking to me and she out of no where was telling me how good I looked.  She said, "no more glazed over eyes, you aren't hyper anymore and your coloring is so much better now that you are off those shots.  The LDN is working for you!  You are fantastic!"

If others see the difference and I feel the difference...then there has to be a difference in LDN as opposed to the other medicines.  I still feel everyone owes themselves the chance to go on LDN....if only a trial run.  You deserve it! Your Life, Your Fight, Your MS!  Your Choice!

Peace,  donna

Nov. 22,  2006

~Exactly 10 LDN Months~Feb. 10, 2007

Hello all,  I am in month 10 now and can say I don't realize I have MS most days.  Low Dose Naltrexone has been really good for me.  I sadly say I have not been exercising like I should and it really affects the way I feel even more.  Exercise makes you feel fantastic.   Endorphins kicking up again!  haha!  Rebounding on my mini trampoline for 20 minutes is amazing, and how good my legs feel, and just overall.  How blessed I am, to be able to control my legs that much,  because when you rebound, you have to force the legs. Make them lift up and move.  God is Good!  I absolutely need to get back to my yoga.....I confess I haven't been doing it.  When the weather warms up I will be back on my bike.  For sure.  I miss the sunshine, but I hate what I think it will do to my skin later down the road.  But sunshine is good for us with MS.  So it has been told to me. Going back to the exercise..when I don't...I just have this need to stretch and stretch.....that is the stiff leg thing so many with MS say they experience.  It is your body calling out....stretch me, bend me, move me!  It is so true...because I never felt that when I exercised the way I should.  I get out of bed in the morning and tightened my legs and I call it squeeze stretching...haha!  I cannot stretch enough.  But it isn't really the right kind.  It truly is the body resurrecting,  waking up.....wanting you to move it! You have to keep moving with MS!    Your body is screaming out to you! 

Okay everyone, month 10 is amazing!  I have had bronchitis, the second time in 5 months...but some one told me, that has been on LDN for over 2 years, that the LDN may start helping stop those type of infections. I still go to my acupuncturists every three weeks.  It helps so much!  I only wish I could afford to go more often.   I really hope!  Take care all and remain strong!  You are not alone! 

Live, Love and Laugh,  donna    

Well I am almost on the two year mark.  No flare-ups!  I am not saying no symptoms, but no flare-ups.  LDN was one great thing I did for myself.  I don't have a single regret!  I am feeling really great and life is good.

Oh and my left eye has been behaving itself since on the LDN too! 

Okay until next time....Be Happy and Be Healthy!  Peace to All!

Hello All!  I just wanted to say,  if  " you decide"    that Low Dose Naltrexone is something you would like to try,  then I want you to know if you cannot convince your present doctor.... I will be more then willing to help you find a doctor.  Read the info about, "How to Talk to Your Doctor About LDN".  Then you can see if your doctor is totally blocked to new ideas. haha!  If I can't help you then,  I will try to fine another that can.   I know the struggle and frustration.  It took me about six months to find a doctor and I got help from someone to find him.        Email me at: donygirl41@aol.com

God Bless You All!  Stay Healthy, Stay Strong!  Live, Laugh and Love!  Donna