We've Come a Long Way
I'm Cathy. I am 55 years old. I gave birth to my son in 1983 and had severe headaches after his birth but no MRI's were taken, they gave me some Tylenol with codeine and sent me on my way.
After a week or two, the headaches subsided. In October 1985 I gave birth to my daughter, and when she was six weeks old I started to get this blurry film over my right eye. I was sent to an eye doctor who in turn sent me to a neurologist, who in turn sent me to have an MRI which resulted in the conclusion that I had "early MS". The neurologist actually told me, there is no cure, and everyone is different and takes a different path so I should just go home & ignore it and when I do have a flare up he will give me some Prednisone to shorten the duration of the exacerbation.
So from 1985 to 1994, I would average two exacerbations a year, take the Prednisone, which would cause me to gain weight, grow facial hair, have black gums, and a bunch of other side effects. In 1993 Betaseron came on the market and everyone wanted it. They made up a lottery system and I was number 77,000. A lot of people dropped out so my number came up in May of 1994.
The first injection was given at my doctor's office in the afternoon, and later that day I had a reaction to it where I couldn't move my legs at all. The doctor reduced it to half a dose for a month and then when I resumed a full dose I was fine. For the next 20 years, I gave myself an injection every other night. I never had an exacerbation again. The damage that was done from 1985 to 1994 could not be reversed, but at least I wasn't getting any worse. The damage that occurred during those first years was no control of bladder or bowels, legs feeling like they weighed 100 lbs. each, numbness on the bottom of my feet, and from the waist up I was fine.
Two years ago I got up from sitting, took a few steps with my cane, my knee hyperextended and I fell. It took a whole summer of laying on the couch 24/7 and after that, I was using a walker because it could happen again at any time. So at the present time I am using a walker, my balance is off, I drag my legs and trip a lot, I have limited time standing before my legs give out, and I have hand controls for my car because if someone cut me off I wouldn't be able to react fast enough. So I use a handbrake and my right foot sits on the gas.
A few weeks ago I was on the internet and saw an article about low-dose Naltrexone helping autoimmune diseases. I called my doctor & asked if I could try it. I started with a 3mg pill and the first night I didn't sleep much and was sick to my stomach the next day, but the next night I took the pill at 10 pm and a Melatonin 10mg pill at 11 pm and I slept fine. It has been over a month and I am now taking 4.5 mg every night. Tolerating it well and I have way more energy, hardly any fatigue, much more time standing on my legs and my incontinence is even improving.
I do not take the Betaseron any more, but I still take the Ampyra I have been taking for a few years. This drug is supposed to take months until you see the full effect of what it can do so I am eagerly awaiting my next accomplishment!
Thanks for reading my story. Be well. Cathy
Do you have a fear of needles and take medication that requires injection?