Progression.

I’m approaching the one year anniversary of my diagnosis with multiple sclerosis, and as you can imagine, it’s on my mind a lot.

Although I don’t know if there’s any way to really be prepared for news like this, I obviously knew that MS was a possibility. I’d been asked a lot of questions about “numbness and tingling” and it takes about 10 seconds and Google to understand exactly what that means.

What I absolutely wasn’t prepared for was the news that I have a progressive form of this disease. The conversation went something like this: “There are two forms of MS. One can be treated very effectively! One has no approved treatment. You seem to have the latter. We’ll hope for the best.”

Hope for the best? I know this doctor was trying to stay positive, but I instantly wanted to do much more than hope for the best. I wanted a solution. Right now. Before anything progressed anywhere.

I understand now that it’s not so simple. MS doesn’t always fit neatly into one of two boxes, and that some medications actually are used to address progressive disease. My current neurologist is incredibly kind and well-informed, and I have complete confidence that she’s going to help me fight hard to stay as healthy as possible.

But the initial shock of being told “you have something that can’t be treated” has really stuck with me, and I continue to be sensitive to this issue as I learn more about MS and the community of people that I’m now a part of. It can be frustrating, to say the least, to see progressive forms of this disease mentioned almost as a footnote in literature or in research.

Whether you’re feeling great right now or facing some hard challenges already, I know that we all want the progression stopped, and maybe even reversed. And that means attention and research and advocacy. Having a progressive disease, however slowly it’s progressing, feels like living on borrowed time.  I hope that for me and for all of us with progressive MS, there will be time enough to find some answers.


Katie, thank you for speaking out and sharing your story. Unfortunately, your experience at the time of your diagnosis is shared by countless others in the MS community who are living with progressive MS, and is precisely why the National MS Society has made finding solutions for progressive MS a top priority. We need to be able to tell people something more helpful than, “We’ll hope for the best.”
 
I’m glad to hear you decided to seek a second opinion from a specialist in MS care –  it is essential to have accurate advice regarding treatment options for your MS.  While the current disease modifying treatments work best to treat relapses and inflammation, in certain people with secondary-progressive MS, there is some evidence of effectiveness. In addition, early and continuous treatment is currently the best bet against future disease activity. There are also many effective strategies to manage progressive forms of MS. These include symptom management, rehabilitation, exercise, and other approaches.  

We share the frustration of people with forms of progressive MS that don’t respond to available disease-modifying therapies.  One way we are working to speed new therapies to people living with progressive MS is by examining and testing existing therapies (that have been approved for other conditions) for their potential to stop progression or restore function. This innovative approach has already helped us identify therapies with real potential and is why the Society recently committed $600,000 to a collaborative clinical trial of the oral therapy, ibudilast, in people with progressive MS. Ibudilast has been used to treat cerebrovascular disorders and asthma in Japan and Korea. In a previous trial involving people with relapsing MS, some evidence that ibudilast could protect the nervous system from damage was observed, revealing its potential as a therapy for people with progressive MS.

This is just one example of the new attention that will drive answers in progressive MS.  There is for the first time global collaboration and movement to ramp up research in progressive MS that will speed the day when there are life-changing treatment options for everyone with MS.  We know there is no time to waste and we will continue to drive collaboration and make strategic investments in initiatives to uncover answers and improve the lives of everyone with MS. 

Sincerely,
Timothy Coetzee, PhD

Dr. Timothy Coetzee, National MS Society Chief Advocacy, Services and Research Officer, has been a leader in the pursuit of innovative ways to move us closer to a world free of MS since receiving his PhD in microbiology and immunology in 1993. 
 

Tags Progressive MS, Research, Treatment      5 Appreciate this
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Katie

Katie Jennings, Blogger

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at http://steadyshegoes.com.

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    23 Comments

  • Terri   Dec 16, 2013 2:43 PM
    My daughter is 31, was diagnosed 10 years ago. Is doing remarkably well...concentrates on the Paleo diet..swears it's what is keeping her from progrssing. Check into that and may God bless you
  • Terri   Dec 16, 2013 2:43 PM
    My daughter is 31, was diagnosed 10 years ago. Is doing remarkably well...concentrates on the Paleo diet..swears it's what is keeping her from progrssing. Check into that and may God bless you
  • Garry Kousoulou   Dec 16, 2013 3:21 PM
    stay positive, keep as fit as you can and eat well.........
  • Tim   Dec 16, 2013 3:43 PM
    Hi. I was diagnosed 5 years ago with Progressive MS at 36. I receive

    Tysabri treatment as my symptom path showed difinative relapse and repair 3 years ago. I am in my 3rd year of treatment and my MS has not progressed or worsened in 2 years straight.

    Everybody with MS is different and nobody, not even Doctors, can tell you definitively what is going to happen to you. Fact.

    I eat healthily, exercise my body and my brain regularly and practice a positive outlook. I never say CAN'T and NEVER SAY NEVER - have hope, keep fighting it, look it in the eye and tell your MS that YOU are in charge and not the other way around.

    I produce the Magazine for our local MS Society Branch in Bournemouth and I'm more than happy to send you, or anyone else who finds there way here, a copy for support.

    You're never alone in the MS Community. Keep Positive. Keep Strong and Keep Well. Check out my story of diagnosis at www.whatms.org.uk

    Like it?! What a mess!

    Doesn't have to be a mess, just a glitch on the way to "New Normal"

    Tim :)
  • The8thDoctor  Dec 16, 2013 3:55 PM
    Hello and greetings to my fellow (something) - progressive MSers. It shows what kind of deal you get with this disease, in that progress here is considered a bad thing, and people are trying to stop it. You'd think it was Congress or something. I'm 57 and am lurching into my 5th year with PPMS. I have aquatic therapy twice a week and in that pool I dance. Never stop dancing outside, or in your soul. It really annoys MS. Good.
  • Jean   Dec 16, 2013 4:25 PM
    Nice to hear such positive comments. I am especially interest in the Paleo diet as a way to help with MS. Has anyone else tried it?
  • Kim Butler   Dec 16, 2013 4:31 PM
    I was diagnosed in September 2003, my birthday month. I had many lesions on my brain to start out with. I was told to make sure I get a scooter chair and use it as much as possible to preserve my energy. I am 46 years old now and I do not have a scooter chair as of yet. They told me not to use chiropractors but I believe chiropractors keep my body functioning. I believe every person diagnosed with MS find results in different ways. No result is typical but we can all make suggestions. I pray that you find anything that works for you and share it with the rest of us.
  • Melanie   Dec 16, 2013 5:21 PM
    My mom was diagnosed (took a long time) with MS in the late 1990's. By my high school graduation in 2001 she was relying on a wheel chair. She did well for years until a few years ago when she fell while transferring from the couch to her wheel chair... fracturing her feemer. From then on she was bed ridden. My dad worked full time and cared for her. She passed away this past June at age 56 when blot clots in her legs moved into her lungs. I hope and pray for an end to this disease.
  • Avatar
    A_J_  Dec 16, 2013 5:26 PM
    Aculuncture helping and water aerobics
    ..Palmyra for walking, wish there was more!@
  • Daryl Hoefs   Dec 16, 2013 5:39 PM
    Diagnosed 5 months ago. Started tecfidera to slow lesbians. Fell twice last week from inbalance and very unsteady on my feet. Don't know what to expect next but hope things don't get worse. Very tired and weak all the time. Any suggestions appreciated. Thanks
  • Lisa Fasnacht   Dec 16, 2013 7:02 PM
    People like yourself that battle this awful disease have a strong hold on my heart. I wish I could do more. We are riding in the break away to key largo. We plan on riding 200 miles over the weekend. We are training hard. More so we are pushing hard for donations to help find a cure.
  • Heather   Dec 16, 2013 7:47 PM
    Hi Katie. I was diagnosed with primary progressive MS this year. I'm 38 and we have three young children at home. I lived many years with confusing and mis-diagnosed symptoms, ironically working as a speech language pathologist in a rehab hospital treating patients with TBI and MS. My progression this year forced me to leave work. However, I feel very fortunate to be treated by the same doctors and therapists that I once worked with side by side. Thank you for sharing your story. I'm right with you looking for an effective treatment and cure rather than "hoping for the best".
  • LAURIE   Dec 17, 2013 3:29 AM
    That's all you can do is to keep living your life
  • LAURIE   Dec 17, 2013 3:29 AM
    That's all you can do is to keep living your life
  • Stephanie   Dec 17, 2013 3:37 AM
    Helpful. Working through the challenges of MS for 8 years. Currently my legs are feeling a bit different. Slight numbness for a few seconds and lumps in my stomach area due to injections. My medicine may be causing a few additional challenges but I thank God that I am Living Life Like Its Golden.
  • Kelly40  Dec 17, 2013 5:21 AM
    I was diagnosed with Chronic Progressive MS in 1992, I later had an exacerbation, hospitalized,and was told I would never walk again... To make it short, I did walk again.. I did Beterseron a year later though Johns Hopkins before it had been publicly released.. There was a world wide lottery for a chance to obtain the med.. I was removed within six months due to side effects by the doctors at Hopkins.. I weaned myself of all meds over the next few years, 15 years later I tried copaxone through a University study, this too was discontinued.. I am not on any ms meds, I am walking, I am living a relativity normal life.. My recent mri looks like I should not walk, but I do.. My cognitive tests, neuro, and other issues are slowly progressing but at a typical level for someone who really had RRMS and now SPMS... They were wrong with my original diagnoses.. My doctors are from the very best facilities, I do not do ms meds, this is approved by my doctors and I am feel very bad for people that doctors convince or publications push the ms med. agenda.. Many people live very well and longer without ms meds.. MS is bad enough but not fatal.. So many patients are fed massive meds and literally die from organ failure, not MS.. Please know it is a personal choice and journey.. I totally support this, but please look at the long term side effects vs the long term effects of a disease like MS..
  • Lisa Fasnacht   Dec 17, 2013 3:38 PM
    We are riding 200 miles for this cause. We are also easing money for this cause. I also happen to own a kayak shop. I would like to arrange a kayak trip free of charge for any one who battles ms. If your physical able to paddle or not. I have team Scubie ( cyclist and kayakers). That could and would get in a double with you and do all the paddling. If interested call me at 772-216-2820 and we will work on setting a date
  • cathy Kinsey   Dec 17, 2013 5:49 PM
    My doctor told me I had progressive MS. I do have MS verified by a spinal tap and multiple MRI's but...after taking Rebif and other injectable meds.. I use low dose naltrexone. Stable for years...;check out low dose naltrexone .org and the paleo diet does help. MS Injection medicine made me worse and worse...LDN made me better!!! Please educate yourself and read read read. Try Yahoo groups MSers. And definitely Low Dose Naltrexone.org...Luv U ...No worries.U can reverse this.
  • sandra dodson   Jan 8, 2014 7:28 AM
    I have relaspe-remitting MS..but lately my feet go numb and have a dull aching sensation by my ankles and the top of my feet. I am taking Copaxone...does anyone have the same problem? Would love to hear from you....thanks so much.
  • Avatar
    hanyagordon  Jan 14, 2014 6:11 AM
    I have PPMS, and being told that there is nothing that they can suggest feels a little bit like being told to 'suck it up'! Not what you want to hear.

    I take life a day at a time. Hope for the best. Expect the worst. See what I get. It isn't easy, but no one said it was going to be easy x
  • Diane   Jan 28, 2014 3:24 PM
    I'm sorry to hear of your MS diagnosis one year ago . It is frightening to imagine what is to come, however you have to remember that the only absolute with MS is there is no absolute. Your life with this disease will chart it own path, unique in every way. I was diagnosed in 1975 and here I am at 60, living in my own home with 3 dogs as roommates, still managing to get done what needs to done. I was told way back then I would never walk again, and guess what.. I may not walk gracefully, but I do walk, gratefully ..Life can be as wonderful as you want it to be..just be happy with what you have now, tomorrow will take care of itself!
  • marsha michaels   Oct 13, 2015 6:12 PM
    Hello all. I was diagnosed at forty. I had benign symptoms for 20 years previously, before my left leg would not take any orders from my brain. I have also dealt with frightening comments. I learned we are all different and when we think our future is limited, it is. I'm turning 69 next month and have waited a very long time for some drug to repair myelin. When I wanted to be in a trial, I was denied because I was to old!! I have seen Dr. Hauser at UCSF where he now leads with the B cell experiment. When I originally saw him 20 years ago, I was walking. Now, I'm very limited. Life turns on a dime so we enjoy what we can and hope for better days.
  • capt-cath6  Oct 20, 2016 7:31 PM
    I was diagnosed as PPMS and it is as you say, like living on borrowed time, but we all live on borrowed time, it is just people like us appreciate the time we have more. I have many issues already and have my days where I am asking my Dr. and nurses why can't they find some relief for my issues,they can get very old,fast! well maybe some days I am probably way over opinionated! ,but think the Neurologist,ms Dr. & staff are used to me asking way to many questions by now, anyhow everybody hang in there,we are in this together,enjoy each day and the simple things in life (live,love,laugh)