What a great idea to have us MS patients share our story..here is mine....
 
Oh boy...where do I begin. I'm gonna have to try and make this shorter cuz it is a long story really.

I will begin by saying that my first indication that something was wrong came in 1989 when I had a problem with my left eye. There was a blind spot that would not go away. I remembered that I had one in my right eye maybe about 4 years before that and was told that there was nothing to be found at that time. This time my opthamologist said that the only thing he could see was some inflamation of the optic nerve. I thought...whew.....dodged another bullet there and took some of the literature that he gave me...it was called Optic Neuritis...hmmmmm I, being the inquisitive one, went home and started to look through my medical books. The doc had scheduled me for some additional tests but never mentioned why.

I started doing my research and when I saw what was listed as a probably cause for the Optic Neuritis, I swear, the world stood still for just a brief moment....multiple sclerosis!! I had to read it several times before it sunk in that MS was a possibility. I called the doctor back and asked him point blank if he was scheduling those tests for me to test for MS and he said yes. I was floored..could not understand why he never said a word in his office. I now know that back then when there were no medications or anything for MS, their standard M.O. was to just send the patient away and hope that it never returns...after all...why scare the beJesus out of someone for nothing right? Well I had given this a lot of thought at the time and asked him if he diagnosed me with MS..could he cure me? Of course I knew the answer...he said no so I told him to please cancel any further tests. What was the point of having a diagnosis I thought. Ruin my chances of getting future employment.......future insurance? My thought was simply to go on with my life and do the best I could until a cure came along.

My blind spot disappeared on its own and I was not impaired at all. I decided that my life would go on as usual...well this after a full week of crying of course. I could not believe that I had this horrible disease where you never quite know what is coming....when will the other shoe drop? I decided to continue going to the health club...no reason at that point to give up those wonderful aerobic classes. My philosophy is that there is always someone worse off then you.  I was in great physical shape...early 30's.

In 1997 I bought a computer because I felt that it would be a good thing to hook up with others and to stay connected to a support group. I could never quite figure out why I was doing so well and others were not. We even met a group of these people in Vegas about 5 years ago and most were walking with canes...I almost felt guilty that I had no permanent damage. Well about 3 years ago when we moved to a new home and area, that is when I kind of started to slack off of the exercise classes. I stayed active riding my bike but nothing like what I used to do and I started to notice myself declining. By that I mean that I started to notice that my balance was suffering and my legs would get numb for months and now I just can't walk for long distances before my leg muscles get fatigued. I was also experiencing a lot of strange eye symtoms.

About 2 years ago I said to myself....self...it's time to look into one of those injectable drugs that they say could slow down the progression. I went back to my support group and started asking questions about what everyone else was using. I kind of fought the use of these drugs because I often wondered what was worse. My symptoms, I felt, were just not enough to justify those daily shots. What are the side effects from injecting these substances into you once, twice, daily? I was not too happy to be thinking about it but just thought that the time had come. Well someone mentioned something to me that sounded weird....something called LDN.  Now MS is very notorious for scams so you just kind of listen and make your own evaluations based on your gut. He sent me to www.lowdosenaltrexone.org. I started researching it and thought...hmmmm this certainly has the backing of a lot of what I consider intelligent people so I thought...maybe... I kept looking into it and everything about it screamed at me that this was legitimate. There is a Dr. in New York that had been experimenting with the use of a low dose of this drug for HIV and now auto immune diseases. He gave an interview on a NY radio station that I got a copy of and is now on a site for listening online.  His theory is that when you take Naltrexone at a much lower dose of 4.5mg as opposed to the FDA approved 50 mg that blocks endorphins, the lower dose fools the body into thinking that it needs more endorphins, thus producing 200% to 300% more the following day. This in turn regulates the immune system back to normal working condition. Therefore once you start taking the LDN once a day there should be no further progression of the MS. Also good for lots of things like Parkinsons and Systemic Lupus, ALS...ummmm all auto immune disorders.  Now mind you, the injectable drugs claim that they will help about 30% of the people 30% of the time. The LDN is supposed to have a 98% effective rate. Now what do you think about those odds? Well the LDN has never been clinically tested for this purpose because there is no hope for a patent on it...it's been in use for about 19 years now. What pharmaceutical company is gonna wanna throw millions at a drug with no payback. An orphan drug essentially. There is certainly a groundswell of us taking it and one day it may make it to the daylight but who knows. Those drug companies are a formidable advisary...they make billions on the injectables annually. We all know how all that works...it's a money game.

Well I searched for a neuro that would help me by prescribing the LDN and they wouldn't have anything to do with it...their money was on those "approved ms drugs". They would not go "outside the box" as it were. I did not take no for an answer and found myself the most wonderful internist who is now prescribing it for his other ms patient with great success. I hope to never see another neurologist again.....don't need one now.

Oh boy..this is becoming a book...still awake??? Oh and one more thing....I finally realized why I was doing so well all those years with my aerobics.....I was producing all kinds of endorphins with that and when I started slacking on the exercise is when the MS started to progress. I've been on the LDN for about 2 years now, having started in May of 2002 and so far so good.

Joyce