That Was Then, This is Now

I first heard the words, “You have multiple sclerosis,” in 1986. I had no idea what that was or how I got it. How could this happen to me at the age of 28? I had my whole life in front of me. What would become of me? How will my life change? Will my boyfriend still love me? Will I die from it?
 
I had so many questions, and there were not many answers.
 
I refer to that time as the Dark Ages of MS. There were no medications or internet—no directories to find others who were living with the disease and little information about what MS was. I was frightened, alone, overwhelmed and angry.
 
That was then. Today, there are many approved treatments and countless ways to discuss the illness and socialize both online and in person. There’s a growing amount of research, and a shift in perspective about the disease. 
 
I often tell newly diagnosed patients they are ironically diagnosed at a “good” time, despite the news itself not being “good.” Why you ask? Let’s see some of the advances since I was diagnosed:
 
THEN: In 1986, there were no FDA approved medications. The standard protocol for treating an exacerbation was the use of steroids, either Solu-Medrol (injectable) or Prednisone (oral) to reduce inflammation. It’s a speedy method to fight a flare-up, with many risks of difficult side effects.
 
NOW: There are more FDA approved medications for MS than ever. For the first time, there are DMTs for pediatric and progressive forms of MS as well.
 
THEN: There were three types of MS: relapsing-remitting, primary progressive and secondary progressive.
 
NOW: Today there are four types of MS: clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), and primary progressive MS (PPMS). Read more about them on the National Multiple Sclerosis Society’s website.
 
THEN: Information about MS was scarce. The local library was a fair choice to find information, but if your library was anything like mine, books and periodicals were outdated.
 
NOW: Once the internet became accessible and user friendly, the sky was the limit for finding credible information.
 
THEN: I clearly remember a visit to my neurologist when I asked if they’d recommend trying yoga, acupuncture, massage and herbal supplements. Without hesitation—no discussion, no explanation—the response was a clear and adamant no.
 
NOW: Slowly but surely, the medical community recognized the benefits of complementary medicine (a range of medical therapies that fall beyond the scope of scientific medicine that are used alongside treatments to emphasize a more holistic, patient-focused approach of care to treat the whole person). There are endless possibilities for complementary medicine to help a patient, and with more research focusing on this growing area, patients will continue to benefit by exploring integrative medicine (you can read more about complementary medicine by clicking here).
 
THEN: I was about to be engaged to my boyfriend when I was diagnosed, so I asked if I could still start a family and what was the likelihood that my child could inherit the disease. I was told there was less than a 1% chance of passing MS from mother to child. There were no support groups for children or parents of children with MS in my area.
 
NOW: According to The National Multiple Sclerosis Society, “The risk for a child with one parent who has MS is approximately 2%.” Also:
 
“Approximately 3-5% of all individuals with MS experience disease onset before age 16. Two recent consensus reports – one by neurologists in the United States and one by the International Pediatric MS Study Group (IPMSSG) – provide helpful insights into the management of MS in the pediatric population.”
 
There are now self-help groups for families dealing with pediatric, teen or young adult MS.
 
THEN: After my diagnosis I was told to go home, rest and call the doctor if I had an exacerbation. I quit my job, gave up my apartment and moved back home with my parents. My doctor offered no hope or sage advice except to say not to overdo any exercise program by getting overheated.
 
NOW: Exercise is not only encouraged but recommended for people living with MS. Any amount of exercise is better than none and can lead to improved overall health.
 
These are just a few of the many developments that took place over the last 30 years to try and improve the lives of people with MS. I have great hope that the next 30 years will see extraordinary changes in ways that we can’t even imagine right now, including a cure.
4 Appreciate this
| Reply
Cathy

Cathy Chester

Cathy Chester is a Boston College graduate whose writing has appeared in numerous online publications, including The Huffington Post, Everyday Health, NARCOMS Now, Momentum Magazine, and The Mighty. Since being diagnosed with relapsing-remitting MS in 1986, she ensures that although she has MS, MS is not the sum total of who she is. Cathy has been interviewed by Woman’s Day Magazine, Everyday Health, Health.com, and many other MS and health-related websites. She currently lives in New Jersey with her husband, son and two adorable cats. She enjoys writing, reading, knitting, classic movies, music, theater, art, hiking, biking and paying it forward to others. Read more about her journey on her blog.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    6 Comments

  • June Halper   Jul 17, 2019 5:11 PM
    Interesting blog Cathy. Full of hope. 👍
  • Anonymous   Jul 18, 2019 6:55 PM
    It is good, of course, that patients have treatment options. But the risk factors of said treatments remain very high, not to mention their harsh side effects. I am using Avonex, which is an older injectable that has been around since the nineties. It is baffling that the makers of Avonex can't update in some way: lifelong treatment on an injectable that has demanding side effects is difficult. I also do not want to inject Plegridy, which sounds even rougher.
  • Pearl   Jul 19, 2019 9:49 AM
    I was diagnosed 15 years ago when I was 49 years old. I did one clinical trial using Avonex and dropped out after two weekends due to the bad side effects. I was getting ready to start a new job and needed to be alert and at my physical and mental best. I live alone and decided the DMTs were more dangerous for me. I changed the way I eat, I exercise regularly, and follow all the non-drug advice for a healthier me. I think people need to decide what is right for them. We are all individuals and I don’t profess to know the “correct” way to manage this disease. I, too, hope that the available therapies can improve regarding side effects and long term issues. When talking with other people who have MS, I realize how different it affects each person. Therefore, the treatments can be just as varied. Wishing you all happy and manageable days!
  • Anon   Jul 29, 2019 10:01 PM
    The risks of AVONEX are many, and so are the ongoing demands of a never-ending treatment that requires a weekly intramuscular injection and makes patients ill. This grueling regimen has become normalized to neurologists, who can only explain the whys behind trying to delay progression. However, patients fully understand that worthy goal. What patients don't understand is why a first-line treatment developed decades ago has not been improved in any substantial way.
  • Maxine   Aug 22, 2019 3:09 PM
    Your comments are very interesting to me. I look forward to reading your blog. I was diagnosed in 1978 and I began Avonex shortly after it came out in 1996. I no longer use Avonex or any disease modifying drug. Today, I am fine. I hope to continue feeling good. I have relapsing remitting MS. My Dr. will tell me if and when to continue the med.
  • anon   Aug 26, 2019 10:44 PM
    Certainly not questioning the wish to treat, but the latest news about Lemtrada and mortality is disheartening.