The Decade of the Brain and Possible Progression?

When I was diagnosed in 1986 my parents wanted me to get a second opinion. We drove into Manhattan to meet with a highly recommended neurologist who took a look at me and my MRI. He quickly came to the same conclusion that I had multiple sclerosis.

A roadmap

At the time the school of thought was that your first two years of MS would be your map of how your MS would be for the rest of your life.

Our New York City neurologist went on to say that we didn’t have much to worry about because Newsweek and other publications were declaring the 1990’s the “Decade of the Brain.” A cure would be found in the next five years, he proclaimed, and that would be that.

Huh?

According to The Library of Congress:

From 1990 to the end of 1999, the Library of Congress and the National Institute of Mental Health of the National Institutes of Health sponsored a unique interagency initiative to advance the goals set forth in a proclamation by President George Bush designating the 1990’s as the Decade of the Brain: “to enhance public awareness of the benefits to be derived from brain research” through “appropriate programs, ceremonies, and activities.” To achieve this public recognition, the LC/NIMH Project on the Decade of the Brain sponsored a variety of activities including publications and programs aimed at introducing Members of Congress, their staffs, and the general public to cutting-edge research on the brain and encouraging public dialogue on the ethical, philosophical, and humanistic implications of these emerging discoveries.

I believed what my doctor told me. I was young and naive and believed whatever I was told. There were no approved medications. There was no internet to rely on. I was lonely, scared and tucked my small bottle of hope away on a shelf for future use.

I was counting on a cure

My relapsing-remitting MS went on as discussed with sporadic weakness, numbness and dizziness. The symptoms came and went. Came and went. Came and went. What stayed was the numbness on my right side. It felt, and continues to feel, like someone wrapped two thick ACE bandages around my right foot and leg and has been unwrapped for the last 25 years.

I’ve changed neurologists a few times over the years. My latest one is young, a woman and highly skilled. She looks at the “whole” person, which I love. How am I feeling? What’s new? Would I like a prescription for massages? Do I have any more questions?

Is that aging or MS?

These days my 57 year old body is changing in ways that are expected yet unexpected. Overwhelming fatigue (more than usual.) Is that aging or MS? Bouts of incredible dizziness. Aging or MS? Bladder issues. Aging or MS? Stomach issues. Aging or MS? And so on.

My new neurologist insisted I get 3 MRI’s to cover our bases. I hadn’t had one in over two years.

Results from MRI’s feels like we’re trying to solve a mystery by piecing clues of a baffling and intricate puzzle together. Only this time the puzzle is a debilitating disease that’s incurable, unpredictable and insufferable.

I wanted to hear “everything is fine”

Between a mistake with the imaging center and getting my doctor on the phone I waited on pins and needles for the results. I longed to hear, “Everything is fine. No need to worry.”

I can live with a numb leg. I can live with dizziness, weakness, fatigue, and sometimes a cognitive blip. I can always make lemonade out of lemons.

And I can live with the category of having relapsing-remitting MS.

But this time was different. This time I heard “may have progressed.”

What did she say?

I made her repeat it. May have progressed. MAY. That’s a tricky word. I asked her to explain what she meant. The thing is that after sticking a needle into my body for over 20 years I’ve had a few days here and there when I’m too tired to inject or I simply forget. Maybe subconsciously I’m simply sick of sticking myself with needles. Maybe I’m tired of fifteen minutes of not feeling well afterward. Maybe I’m disgusted with the dimples, bruises and bumps left behind.

I remembered reading this from The National Multiple Sclerosis Society (much to my dismay):

Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with relapsing-remitting MS (RRMS) would transition to secondary-progressive MS (SPMS) within 10 years, and 90 percent would transition within 25 years.

Transition to SPMS

While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS.”

Oh, boy.

I am grateful for medications. I am blessed to have a grant that helps pay for them. I lived in a world with no choices. I’m thrilled that the MS community now has options.

I am praying that having MS for 30 years means I’m out of the danger zone.

I get tired of it all sometimes. My neurologist understood that and gave me options.

For now I’m sticking with my current medication (pun intended) and doing my best not to be too tired or forgetful at the end of the day. It’s the best I can do for now, to do whatever it takes to make sure that, hopefully, nothing progresses.

I have hope and I have prayer

Please remember that we all have MS differently. We all react to medications differently. We finally have choices (depending, of course, on your insurance plan.)

My choice is to do my level best to stay as healthy as possible in my 50’s, 60’s, 70’s, 80’s and beyond with the medication I am on combined with a healthy diet, moderate exercise and positive living.

It’s all about quality of life. The Decade of the Brain is now! Take care of YOU and I will be happy, dear readers. Do the best that you can within your abilities.

Bless you all.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • Julie
    2 years ago

    I turned 57 this year and also finding myself asking, “Is it MS or just my body aging?” I got tired of blaming MS for everything so I started pinning the age thing on all symptoms. My neurologist disagreed (they are so irritating!) So after dealing with this for 15 years now, I have figured out more or less the difference. My vision is the priority right now. I had some kind of attack at the first of this year where I lost my vision temporarily. I pinned this one on MS so imagine my surprise when I saw the eye doc last week and he tells me I have cataracts in both eyes. Guess I don’t know as mmuch as I thought I did.

  • Cathy Chester moderator author
    2 years ago

    Ha! It’s so hard to figure out what’s MS and what isn’t. But you remind me…of me! At 57 we’re both navigating our illness the same way. Good luck with the cataracts. I wish you well always~ Cathy

  • Onlyup
    2 years ago

    Cathy, Wow, your story book reads very similar to mine. I am 52 this year and living with MS since 1986 also so moving toward my 30 year “benchmark” with MS. I saw my Neurologist at Johns Hopkins last month for my annual “follow-up/check-in” and same thing. No change on MRI so no change in Meds necessary and yes, I MAY be transitioning since my left side is becoming more numb. HUH? So I asked my Neurologist, what are researchers doing to help build/rebuild mylin and where are we on STEM CELL/Immune system rebooting in the U.S. and she replied, that is far off. Again, HUH? I came to the conclusion I can find out more current studies/programs on my own and what are my needs as my own advocate.
    Where am I, caught between a government-imposed barrier to working no more than 1130.00/month while on disability and afraid to jump to full-time work and lose my disability. Hopefully, Speaker Paul Ryan’s “Task Force” will remove the imposed barrier so I can work as much as I can before I MAY transition further down the MS slope.

    My previous Neurologist before I moved had used the term “Decade of the Brain” also and had in office hopes too. Currently, the federal gov’t put money into NIH for “mapping the brain”

    http://www.nature.com/news/nih-serves-up-wide-menu-for-us-brain-mapping-initiative-1.13745

    along with incorporating a database for determining numbers of individuals with which illnesses. How can researchers get funding when our system doesn’t even know/track the actual number of persons with MS, ALS, Parkinson’s, etc…? It’s a guess at best, sad but true.

    Sooo….I decided I can find a study and try to be a participant, go to another country to do STEM CELL/Immune System rebooting (which is showing promise in Canada), risk where I am currently on the dole by going to work full-time and possibly transition further down the MS slope, or stay my current course of working part-time within the gov’t-imposed barrier and hope I “maintain” my cronic disease which MAY get worse. Hmmmm….

  • Onlyup
    2 years ago
  • Nancy W
    2 years ago

    I saw my neurologist for my annual MS checkup a few days ago. My insurance company wants a new letter of medical necessity. So after reviewing my MRI, which had no changes, an exam and my history of a minor new symptom that requires Gabapentin.(itching) , she said. You are doing well, but your neurological exam is not normal. This is what she said she has to get across to the insurance company. Am I doing well because of my med? Who knows. I will continue to stick myself because I don’t want to find out.

  • DaveR
    2 years ago

    I was also diagnosed in 1986, and I became disabled in 2000 after an Ostomy surgery (don’t let anyone put the pain medication into your spine. I got back my ability to walk without any aids in 2005, and learned the hard way of trying to work and fighting with Social Security in that the government never looses.

    I a not sure how bad your MS is today, but my brain and spine have been totally destroyed by the MS. The neurologist who diagnosed me was like a father to me, and when he retired I had a hard time finding one like him. He was honest with me, and I liked him because he was always straight forward with me and listen to me and what I wanted to do. It is hard to find any doctor with compassion that listens to what the patients says since we are the people with the disease.

    I went back to Neurologist #3 since he has now joined in with another university that does a lot of testing, and because of my illeostomy attachment oral drugs may not have time to dissolve before they go into my bag. Because of this I have to now rely on infusions which I will not go back on Tysabri even though it is the drug that made me mobile so I now I a going onto the new chemo drug and I hope the new therapy comes out very soon.

    I have always tired to find the humor in everything, but when my son also came down with MS I just could lot find any humor in that, My mom had MS, and you know how difficult it was for both of us. When my mom came down with it at 16 she couldn’t speak or move and they did some horrific things to her that they thought she couldn’t feel like pulling all her teeth out. I was put on steroids which ruined my liver, and they thought the Tysabri gave me PML which was not a fun thing to wait on that yest to come in back in 2009. There will be a sure for MS before my son gets to my age, but for us I was told it may or may not be beneficial,

    Keep the hopes up and remember you know your body better the anyone.

  • Cathy Chester moderator author
    2 years ago

    I agree that we have to try and keep our humor at the ready no matter what happens to us with MS. What choice do we have? You are so right to do so and I applaud you, Dave. We both have traveled these rocky waters for too long so let’s journey on with hope in our hearts. I hope we both stay strong as we continue on. Thanks so much for sharing your thoughts with us. Best always, Cathy

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