How do we deal with not knowing?

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New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/19/2009 3:19 PM (GMT -6)   
I was diagnosed with probable MS in April of 2008.  I am 31 years old and remember feeling like my feet would burn while on the treadmill when I was about 24.  I thought it was because my shoes were too tight so I didn't really do anything about it.  Then, 3 years later I noticed that when I bent my neck down, my left arm would tingle.  A few years later after that, my feet kept feeling like they were falling asleep.  I also had burning sensations in my hands and feet.  I told my fiance at the time and he became very worried.  I had an MRI done and they did not find any lesions on my spine.  The MRI of my brain showed 4 lesions.  They were suspicious for MS.  Anyway, my neurologist told me that it was very mild and started me on Copaxone.  I'm just having a very difficult time living with not knowing what may happen to me in the future.  I feel like it's sort of holding me back from living my life to the fullest because I am on edge.  My symptoms come and go.  I was taking Neurontin and it really helped.  But now I am off of it because my husband and I are trying to get pregnant.  Does anyone have any thoughts as to how I am feeling?  Thank you for your help.

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 3/19/2009 4:30 PM (GMT -6)   
That is truly the issue with MS.  It is not like being in an accident and being disabled.  That is also tragic but you grieve and adjust and move on.  You learn to live with your new limits.  This disease takes from you, and you adjust and learn to live with limits.  And then it takes again.  You never know when you are going to wake up with a new problem.  It is very very difficult to stay in the "now".  I feel like I have been robbed of my future.  I have noticed that I no longer picture myself in the future.  You know how you do; you picture yourself in ten years perhaps in a different house, or with children, or retired or ????  But I just worrry about today and perhaps tomorrow. 
I am right there with you, Angela.  This is tough stuff.  Just try to enjoy each day and the gifts it brings.  I know that sounds annoyingly simplified but that is the only strategy I have found so far. 
I am sure having kids would be a nice distraction!!  You are forced to think about others.  I am very grateful for my "distractions".
Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

Regular Member

Date Joined Mar 2009
Total Posts : 90
   Posted 3/19/2009 4:48 PM (GMT -6)   

I am sure that many of us with MS have gone through the same kind of feelings that you are experiencing.  It may take you a while to come to grips with your disease, but you have to be careful not to let MS and its symptoms overrun your life.  What I mean by that is that you are still capable of having and attaining dreams, and you should not give up on that.  You may have to adjust your dreams a little, but that is not always a bad thing.

I was in nursing school when I had my first major relapse, which was eventually diagnosed as MS.  I no longer have the physical strength or stamina to be a nurse, so I have had to readjust my goals.  I am now going to school to be a writer, which is good because I will be able to work from home, and even on days that I can't walk across the living room unassisted, I can still sit and type.  My career change turned out to be a blessing in another way as well-because of my illness, my priorities have been refocused, and I am now pursuing a career that excites me, rather than one that will simply pay the bills.

So my advice to you is-

Take some time to grieve if you need to, then pick yourself up and make some plans.  Don't sit around waiting for the next relapse to hit. Instead, figure out what's important to you, and then pursue it.

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

Regular Member

Date Joined Dec 2008
Total Posts : 196
   Posted 3/20/2009 1:47 PM (GMT -6)   
Dianna, very good advice.

Angela, just don't let MS ruin your life. Just because you have MS doesn't mean that you can't enjoy life and do lots of things you want to!
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

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