Wait, wait! Don't tell me.

Fall is coming. The fields and farms out past my house are starting to look like they did last year, when I took a long walk in the late summer and noticed that one of my feet was dragging a little bit. When I walk out there now, and see the seasons changing, I can’t help but think about everything that’s happened in the past year -- my initial MRI, diagnosis, all the subsequent appointments, and the start of the medication and a different diet.

In a few weeks, I’ll have a follow up MRI and another appointment with my neurologist.  Maybe the medication is doing what it should. Maybe all this healthy eating has done some good! If not, it’s back to the drawing board (maybe after a giant ice cream cone) and we’ll see what might come next.

But here’s the truth: I don’t really want to know.

Right now, I feel healthy. I can walk a long way before I notice any weakness in my right side. The slightly tingling, feverish sensations that I used to have on the skin around my torso have disappeared. If there are new or growing lesions in my brain, I can’t feel them. They’re not bothering me. And there’s a part of me that would prefer not to know anything about them. I don’t want proof that things are not as they should be. I don’t want to think about harder truths.

Of course, that isn’t practical. I want to be as proactive as I can, and that means finding out exactly what’s going on and responding. I’ll definitely have the MRI. I’ll listen to what my doctor has to say and take her advice. I’ll keep moving forward.

But I wonder if there will always be this little voice saying, “Wait, wait! Don’t tell me.” I just want to keep my head down and enjoy the feeling that everything is going well. For the rest of the month, that’s what I’m going to do.
Tags Diagnosis, Progressive MS      6 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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    25 Comments

  • Avatar
    Bobo  Aug 27, 2013 9:22 AM
    As long as my feet hit the ground and I stand vertical, it's gonna' be a good day. Or maybe that's not someone else's new normal. I too hear the little voice that says, "Don't tell me any more bad news!" but in that I've had many neurologist appts in the last 14 years, I've come to push back at that voice. My neuro wants me to be informed when there are choices to be made and discusses the MRIs that are saying good to go, nothing new besides the original holes. So that little voice is fear, but knowing exactly what is going on is sunshine for me. Cheers.
  • leanne   Aug 27, 2013 9:32 AM
    I am two years in and have good and bad days. Don't get caught up in your test results...that can be depressing. Just get out and live. Eat right (most of the time) and exercise and enjoy yourself. Everything else will work itself out.
  • joseph aragona   Aug 27, 2013 9:33 AM
    how come my MS doctor does not tell me about this??
    I am on copaxone for years but I STILL CANT WALK?
  • ccurreyortiz  Aug 27, 2013 10:29 AM
    I understand where you're coming from, Katie. I, too, follow a strict diet (even while currently pregnant!) and I only hope that my post-pregnancy MRI doesn't reveal anything new- almost to the point where I don't want to even have one. But I know it's best. Cheers to you, the diet, fall, and an uneventful MRI reading. :)
  • Debi Olson   Aug 27, 2013 10:44 AM
    I absolutely share the sentiment! My latest that I didn't want to know, but saw coming, was the doctor telling me to stop taking the Tecfidera. I've been nauseous since starting it two months ago, and it has escalated to needing to jump and run (something I can no longer do) hoping I make it to the bathroom on time. I had convinced myself the side effects were worth the potential benefits to my MS. So I will go unmedicated for a couple of months, and try something else, with hopes of a better result.
  • Bryan   Aug 27, 2013 10:53 AM
    I was diagnosed with PPMS in 1985 and deal with it on a full time basis. The little voice in my head saying that I don't want to know is still there. I deal with the limitations that I have pretty matter of factly. It is what it is and I'm not going to let the worry of whats to come rule my life. Recently I have been going through another major diagnosis process, I have prostate cancer. It isn't the worst, but it is progressing and will have to be dealt with. I am going to go over my options with another specialist and then I will choose which treatment to go forward with. The side effects are about the same as those that I deal with from my MS, they are just worse. I will make my decision and take care of it and hope for the best. I "don't want to know" what will happen with my ms, or those side effects. I will just deal with it as it comes. Take care.
  • Dyan   Aug 27, 2013 11:37 AM
    That just made me tear up. I too was diagnosed last fall, following 2 months of awful blurred vision from optic neuritis. Last year when I started school (I am a high school french teacher) I was pretty much a distracted mess. This year I am SO grateful to be healthy(er) and starting school with a focus on school! Several bumps over the last year, but you are so right - it feels good to FEEL good! Best wishes to you! :)
  • taylorl  Aug 27, 2013 11:49 AM
    I was diagnosed in April and have gone on Gilenya. I have had 2 cancers and thought that I was doing everything right with diet and exercise for those, so I was shocked with this new disease. I was misdiagnosed 7 years ago with sciatica and it wasn't until the dragging leg started that led doctors to the corrected diagnosis. The leg dragging doesn't leave, so walking is a problem. Self help is very confusing because no one seems to agree on the best way to manage MS. If you are able to walk in the fields, good for you. Keep up what you're doing.
    Linda
  • Janet   Aug 28, 2013 7:53 AM
    I have had MS since the birth of my daughter 48 years ago. At first, it was just tingling down my right side and the doctors blamed it on a pinched nerve. Needless to say, I accepted the diagnoses and went on to have a second child. I was fine all during my next 9 months and after child birth. After my third child I started to feel the numbness again. I had a spinal tap and it showed that I had MS. I also had an MRI and it confirmed it. I was doing quite well until the death of my dad. I guess the stress of loosing him brought on an attack and affected my walking. I dealt with it. I have been on Avonex since it came out and believe it to be working for me. Yes, I walk with a cane for balance and now have to wear a knee brace for a hyper extending knee but I am thankful that I am not in a wheelchair and can still do my daily chores. Yes, I do get tired and hasve to take a nap some days but I thank God that I am alive!
  • Michele Brown   Aug 28, 2013 12:37 PM
    Be happy that you can do as much as you can, I can not even walk anymore. I am glad that you are being proactive! That's very important! Take care, and God Bless you and your family!
  • Bobbi Fox   Aug 28, 2013 6:45 PM
    I was diagnosed with MS in April 2012 and started using Copaxone in May 2012.
    As part of my treatment for MS I have changed my eating habits. I eat as much raw foods as I can and I avoid processed foods.
    I have increased my activities by going to the gym, ridding bike and walking.
    12 months after being diagnosed with MS I wanted to see my MRI results. I wanted to know if my lesions grew or if I had additional lesions on my brain.
    I was relieved to hear that there were no changes to be reported.

    I wish you the best. Take care and enjoy every day!
  • Carolyn   Aug 28, 2013 9:37 PM
    I can't stand up to cook in the kitchen. Is it just health y eating? Is it all fruits and vegetables? Is it no fried foods? What is the right diet for MS?
    HELP!
  • Avatar
    Visus  Aug 29, 2013 6:35 PM
    Need help, how do you add a blog to this site? I just joined and would like to add my thoughts here but can't for the life of me figure out where and how to post. The old blogspot was much easier to work with.
  • Michelle   Sep 4, 2013 6:33 AM
    I was officially diagnosed with MS in May of 2013. Realistically, I have probably had MS since 2005 in which I had my first symptom (numbing on the right side of my face). My condition went undiagnosed for many years until recently, the last 8 months or so my symptoms have not gone away and been slowly worsening.

    My MRI and neurological exam confirmed the MS diagnosis however, the spinal tap showed no bands. I have had two solumedrol treatments to help with the exasperations. The treatments did help many of my symptoms however, it did not make them completely go away (not even close).

    I saw my neurologist yesterday who seems to have a very different philosophy on disease modifying drugs. I fully expected to start a treatment regimen however, I was surprised to here she felt the benefit of taking one of these drugs would not be worth the risks as I have crossed over a threshold in which the disease modifying drugs in her opinion will not help.

    I am still ambulatory in which I am thankful everyday, although not being on a treatment plan seems to go against everything I have read. I do not want to take these types of medication if there will be no benefit in the end.

    I will learn to live with the symptoms and disabilities I have today however,
    my question is how do I slow the disease activity down from here forward with no medication? Has anyone been told that disease modifying drugs would not help them?

    I am more confused now then ever!
  • Celeste   Sep 6, 2013 9:34 AM
    I was diagnosed last year after struggling since 1999 to confirm that I had or did not have MS. I had mild symptoms, but two minor lesions. Now I have eleven lesions, but still relatively mild symptoms. Spasticity, random nerve pain, foot drag on occasion, dizziness, balance problems, numbness, fatigue, etc. The worst symptoms for me stem from my cognitive decline, speech and swallowing issues. Had I been on disease modifying meds all those years, would my outcome been different? Who knows. My last neurologist said it was too late for me to start the MS meds. I got a second opinion. Currently, we are treating my symptoms, which has helped so much! My new doc is reserving judgment on disease-modifying drugs until my next MRI. Don't give in to fear of what your next MRI will show. It is one more tool to help you fight this disease. Stay strong!
  • Avatar
    moorebjb  Sep 7, 2013 10:55 AM
    I have primary progressive MS and there is currently no disease-modifying treatment for that. However, I've been told from many different sources that exercise will slow progression of the disease and keep me walking better longer. I've found water aerobics to be a super kind of exercise for people with MS. Also symptom management meds like provigil for fatigue and neurontin for pain/tingling/burning have been pretty effective. Getting enough sleep and eating properly are hugely important, also avoiding stress. Good luck! I'm 74, was diagnosed in 97 and I'm still on my feet most of the time.
  • Avatar
    g-buda  Sep 7, 2013 11:35 AM
    My diagnosis was in May of this year. After going to the Doctors for left leg pain and drop foot, they called M.S. after my Mri. I am staying as active as possible and eating raw vegetables while taking copaxone daily. Also I am taking lots of protein (drinks and powder) while a wide variety of vitamins and minerals as well. This is how I am trying to defeat my M.S. Any other advice would greatly be appreciated. Thank you Friends.
  • Greg@Travel Scandinavia   Sep 11, 2013 4:05 AM
    I was diagnosed in 2003 and received great support from my neurologists
    The worst for me is the loss of my eyesight and balance when walking
    I often get accused of being drunk
    Eat helthy foods and check outy "The Best Bet Diet" to supplement the eating and do a little exercise every day,even stretching
  • keekee36  Sep 13, 2013 7:01 PM
    Hi everyone i have MS i go my diagnosis in 2009 i have PP MS i am trying to find a neuroligst
  • Avatar
    rega_strong  Oct 3, 2013 1:43 PM
    I was just diagnosed with MS this week, and as crazy as it sounds, I was a kind of relieved to finally know what's been ailing me.

    Thinking back I may have had MS symptoms earlier than first thought. I had blurred vision and numbness/tingling in my hands about 3 years ago, of course thought nothing of it as it went away in a week or so. I then had Achilles repair surgery and noticed afterwards I was feeling different. I've never been in doctors offices before this Achilles issue. I thought all my problems were related to the Achilles surgery recovery. After almost 2 years I was concerned why my legs were still so weak. I've been to Optomologist, Podiatrist, Urologist, Orthapedic and finally the Neurologist. I wish I would've went to the Neurologist first, would've saved me a lot of time in doctor's offices. I now know all these problems came from one diagnosis now - MS. My Neurologist assured me my case is still in somewhat of the early stages although chronic but, manageable and treatable. I'm starting Gilenya after my steriod treatment hoping all goes well.

    I'm ready to fight this head on with everything I got - if anything, this will force me to live a healthier lifestyle and become stronger. My goal is to run again (I haven't in 3 years) and was athletic my whole life, playing baseball through college and still very active with my children. and they're all the motivation I need to get better and.... I WILL!!

    REGA STRONG
  • marshag1964  Oct 14, 2013 6:53 AM
    I was diagnosed in 2006 .in the last 2 yrs, i feel like i have electricity running through.my body .my last nuero.dr. just ignored me when i told him.i seem to be having flare ups more every year. is this a common MS Symptom
  • Avatar
    wyojane  Oct 17, 2013 10:14 AM
    Was just told yesterday suspected aggressive MS or MS like disease affecting whole right side of body. All he needs is one possitive MRI to confirm diagnosis because of extensive health record and clinical observation and exam. He said whatever version this is not going to be good because I am on immune suppresants and prednisone and attack is still on going. I have four other autoimmune diseases and have had neuorological symptoms off and on since diagnosed with Crohn's at age 16 in the 80s. I think it might be PRMS that has suddenly gone aggressive since Aug 16th. Had a major flare in 2004 and 2011 but no one ever ordered an MRI doctor was livid that no one took the time to screen for MS during those obvious episodes.
  • Liz   Oct 28, 2013 12:09 PM
    I can completely relate to how you feel about your MS diagnosis. I was diagnosed with MS 4 years ago and fought hard to regain my ability to walk, but right now I'm in a semi-state of "denial" about my illness. I am fully aware of my disease every morning when I administer my Copaxone shot, and again 3 times a day when I have to take 2 more medications so I can function with the least amount of symptoms. And while I am thankful that I am, for the most part, in remission, I am just tired of having to take all of these medicine so I can appear "normal". I tend to steer away from MS websites, because I'm afraid to face my future, but stumbled upon your article online. I know every MS patients disease manifests & progresses differently, but I don't need a daily reminder of what may come. I have another friend who has MS and she is very energetic & positive about fighting MS by supporting different causes to raise awareness about this debilitating disease. While that works for her, right now, I would prefer to stick my head in the ground like an ostrich, and avoid confronting my disease while I'm in remission. I'll take my head out of the ground when it is time to fight this disease once again.
  • Come along   Oct 30, 2013 10:04 AM
    I was also diagnosed in 2009 by having a spinal tap, and MRI of my brain that the cause of my left side weakness and dragging leg while walking was MS. I am 60 years old and found it to be to my advantage to get plenty of rest, stress is not my friend and eat as many antioxidant foods as possible. If you have a juicer, make and drink plenty of tomatoes and greens. This is good for you auto immune system. I do not take any meds at this time, but if I do feel I need to take something it will be the neurotin mentioned above, without any of those injections. From reading all the above information, I have come to the conclusion the meds (injections and oral pills) are causing more problems than help, and is shortening your viability. I know the doctors want us to take meds to justify the problem, but the solution of stem cells are being kept at bay for reasons unknown, they have found that stem cells have helped some but the length of time is unknown at this time. Also it has not helped some, because of the many strands of MS they cannot tell which ones are being helped vs ones that it doesn't. I know many doctors will disagree with me because they have gone to school for many years to give their best judgment regarding MS but they are not advocating stem cell for solutions.
  • jillie1952  Aug 21, 2015 8:20 PM
    Hi Katie from here down under..... I feel very much as you do, I am on Gilenya at the moment and although I do not have any troublesome side effects, I am concerned about taking any medications long term.