I was diagnosed with MS a little over 19 years ago. At the time, I was 20 years old. I used to have MS attacks (symptoms flare out of control) frequently - every 5 or 6 months - but today it's been 21 months since I've had an attack. And over 22 years ago, I woke up with tingly legs and MS began. 19, 20, 21, 22, ... I'm a numbers geek.
A year after I was diagnosed with MS, I was one of the first to go on a drug called Betaseron. It's in a class of drugs meant to slow the progression of MS by about a third. I don't think it worked for me. There could be multiple reasons - one is I developed an immunity to it and the other is that my MS is weird. After Betaseron I tried the next newest drug, called Copaxone. It worked somewhat for about 5 years. Then I had a reaction to it which is considered "normal" - chest tightened, hard to breathe, hit all of a sudden - it definitely didn't feel "normal." It felt like, well, I couldn't breathe - I suppose it felt like I was going to die. A week later the same thing happened but my entire body shook for an hour afterward. And a week after that, the same thing happened again, but I shook for over 2 hours. I stopped Copaxone - I would have wound up in the emergency room at the least. Then I tried a couple other drugs which didn't work. Then I had our daughter, Lori - a pricelesss gift.
Right before I found out I was pregnant with Lori, I was investigating having an experimental stem cell transplant at the University of Chicago. Thank goodness for Lori. Right when I was about to make the decision to do something very risky, it seemed something was saying no - there are other plans.
I considered 1 more drug after Lori was born - it's called Tysabri. At first Tysabri seemed like it would be great, but over time, something didn't feel right about Tysabri, so I decided to wait. I recall our pastor saying, "you know I'm not going to make this decision for you, right?" Darn! After my decision he asked what I was going to do instead. I told him I would wait and hope for the best. I suppose waiting with MS can be a common thing to do.
After shoulder surgery, a friend asked me about Ampyra. Ampyra is not meant to slow the course of MS - it's meant to help with walking. But it has done so much more for me. I didn't realize what I couldn't do, but life has changed and now I can do these things:
- lift both feet with my heels on the ground
- do 100 squats, almost every night
- walk around the track without stopping
- write with a pencil
- walk further, and further, and further
- sit up straight
- while sitting, play catch or frisbee with my family
- other things - life is just sharper
So 21 months in with Ampyra. I haven't been really sick either. I think when I'm about to get sick I get very tired and go to bed - that solves things. My daughter has had 2 nasty colds and I've had a scratchy throat.
All this has been going on and is really exciting. And while a happy post with no obstacles might be nice for some people, there is still reality. I walk much more and get asked "wouldn't a wheelchair be easier?" I guess I'm not in this life for easier. The obstacles with a walker are annoying - getting a door to open is hard. People who don't know me think I'm struggling when I'm doing much better.
And while I get better, perceptions in society persist. When a person with MS discloses they have MS, things change - perceptions change. They don't change with everyone, but they do change with some - I think there's a group of people who go look MS up and find everything that could go wrong and assume, because I can't walk well, that I must have other things. I was actually told, after I left a job, that when I was interviewed someone asked if they could question my mental ability to do the job since I have MS. In the list of MS symptoms is short-term memory loss. I don't have it any more than any other mom, but some people look for that. If I forget something, a few people wonder if it could be MS, even if it's losing my keys - which I think I inherited from my mom - definitely not MS! I suppose that part of getting my Masters was proving, to myself and others, that mentally I am fine. And yet, I have this feeling (and these feelings are usually right for me), that some people want to use the listing of short-term memory loss on me. When they try it - it's been tried - it fails. And this kind of thing - making things up about disability without knowing the person behind the disability - are what cause many problems that people with disabilities experience every day.
And although the previous paragraph may seem out of place here, the fact is that as I improve on Ampyra, it doesn't mean there aren't still obstacles thrown in my face, or attempted under the radar. It's a mixed bag - one moment I'm walking and walking and walking, and the next moment something strange happens that is beyond my control.
But the good news is that I continue to get better, little by little, and refuse to accept that any given thing may not get better. One just never knows.
22 months ago I unknowingly entered into the world of disability. For 21 months, I have experienced life changes in an exciting way I never expected. I was 20 years old when I was diagnosed with MS. That was 19 years ago (yes, I'm 39). Those are the facts.
So I try to throw the bad stuff over to God, and I celebrate the facts that Ampyra has changed my life and I continue to improve.
Peace.
5 comments:
I always find these kinds of things interesting. For me, I only have 1 small area of lesions and it hasn't changed since I was diagnosed, so my problems are more in between the lesions and movement. Everyone has their own opinions, but I believe when I was very sick as a baby I was exposed to MS and it lay dormant for years. I have never smoked. I didn't drink diet anything until after I was diagnosed. When I gave up diet things, nothing changed in terms of my MS. To really prove that something works, I am a believer in clinical trials using many patients, not just a few. For me, Ampyra has worked and I don't know how far it will take me. But with it, I'll wait on other drugs or therapies until they have been cleared via the FDA. Thank you for your perspective - everyone is different and willing to try various things.
Do you eat canned fruits and vegetables, or drink canned/bottled/packaged juices? Do you eat tomatoes, raw or cooked? If so, you are still be exposed to methanol. You may also be exposed to it in the environment in some way. Please email me for the chapter. When you read it you will see that it is not some thing that lies dormant from childhood. It has a specific cause. Please don't dismiss this information until you've had a chance to read Dr. Monte's findings.
My personal opinion is that Dr. Monte needs to do official clinical trials with a large number of people. I am getting better with Ampyra which went through extensive clinical trials. My personal opinion is that Dr. Monte has listed a bunch of diseases where people can lose hope and grasp for anything. We had bee sting therapy which used people. We have had bad stem cell things in other countries that have used people. So I will stick with Ampyra and am sure that there is methanol in a bunch of stuff that everyone eats, even those people who do not have MS or anything else.
Good news: Dr. Monte has made the chapter from his book that deals specifically with MS available for free download on his website. You don't have to log in, register, or pay any money. It's free and easy! Read it for yourself and find out how you are being exposed to methanol – the one and only cause of MS.
http://www.whilesciencesleeps.com/multiple-sclerosis-the-solution/
He has a number of MS patients who have gone on his diet and they are seeing great improvement.
I really love your blog Beth! Thank you for sharing your experiences!
Post a Comment