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-   -   Five years (https://www.neurotalk.org/multiple-sclerosis/167288-five.html)

barb02 03-29-2012 08:04 AM

Five years
 
Five years ago today I was dx with MS. I remember getting a phone call from the clinic that my pcp wanted to see me. I took one of my best friends with me and we met in his office. I was actually relieved that I did not have a brain tumor and was laughing at the pictures of my skull and brain. You see, the only two people (guys) I knew with MS seemed to be in pretty good shape. They lead fairly active lives, one is still teaching, and travel a lot. Neither used a cane, and still do not. However over time I began to realize that they just did not talk about ms to other people. They now discuss it with me. I have learned not to make assumptions about a person's health because of the way I think they look. When I aske my neuro what my proabable prognosis was, he told me that I had proabably had MS for about 10 years and we would see how I was in five years. So the fives years are up and I still want to know my prognosis;)

I no longer think about ms every day or lay in bed every night thinking about what is going to happen in the future. (I still do some nights:rolleyes:). My MS has been relatively stable. I needed to use a cane when I was dx and I still use the cane when I go out. I have had a girding feeling (ms hug) in my left rib cage and back since day one and it is still there. Some days the pain is worse than others. Others symptoms come and go.

I think I am mentally stronger than I was when I was dx. I have tried to financially plan for the future, but I know that all of my savings could be wiped out if I need extensive care in the future. I am retiring (graduating) from my job as a university professor in a few weeks. I still worry at times about everything, but I know that worrying is not really going to help or change my future.

Sorry for the long post. I was just feeling reflective this morning.:)

Blessings2You 03-29-2012 09:01 AM

I liked your post. It could have been a lot longer and I would still have kept reading.

Kitty 03-29-2012 09:33 AM

I've often thought back to the year I was diagnosed (2005) and pondered the progression of my MS.

It's definitely progressed.......but I'm still doing most things I want to do, some things I don't want to do :rolleyes:, and realizing that, although this was not the life I had envisioned, I'm blessed beyond measure.

Barb, I thought I might have had a brain tumor, too, in the beginning. I had such awful double vision and none of the doctors I went to seemed to know what was going on. To this day I still wonder why MS was not thought of and tested for right away.

The Neuro that diagnosed me was a little surprised at my reaction to the MS diagnosis. Hearing "MS" when you're ready to hear "brain tumor" is definitely a relief. :o

I, too, think I'm mentally stronger than I was pre-dx. Many unhappy things have happened since 2001.......and MS is not at the top of this list......and it's all made me realize that I'm stronger and more resilient than I ever knew I was.

Sometimes I worry about things.....but just for a minute and then I just tell myself that I'm obviously not in charge here. ;) I just do the best I can with what I have and trust that the rest will work itself out the way it's always been intended to. :)

Becca44 03-29-2012 09:43 AM

Great post, barb02. Your reflections are insightful. When I was diagnosed (11 years ago now) I heard (or read, or was told) that the 5 year mark after diagnosis was significant. That perhaps it would be time enough to establish what your prognosis might be and that if you were doing well after 5 years, it was reasonable to expect that your disease course - call it mild for lack of a better more accurate word - to continue. I clung to that hope, whether or not it was true. I don't know that there's any reasonable way to predict what our futures hold when it comes to MS or anything else, but I do know that possitive attitude, gratitude and hope make my present moments happier ones. Constantly worrying about what might happen forces me to emotionally live through hardships I may never experience. I plan too, but only so much.

Thanks for your post today. :)

marion06095 03-29-2012 10:04 AM

Barb, I don't care how many times I hear it, I still feel comforted when I read posts by other MS patients who are dealing well with their fate. Long posts, short posts and those in between, they make me feel less alone with my concerns. We really do need each other, don't we?

SallyC 03-29-2012 11:34 AM

Happy Anniversary Barb.. You've come a long way baby - have a Virginia Slims..:D

I'm glad you will be retiring soon and be able to enjoy life at your own pace.:hug:

I remember waaaaaaay back when I had my first symptoms of MS, in 1964.:eek: Wasn't DX till 1975/6 and remember my Neuro surprised at my possitive attitude. I remember saying, "there are worse things" and he saying, "yes there certainly are".

I want you to know Barb, that my 48 year journey with MS has not been that bad. Up times and down times and interesting times, but nothing I couldn't stand and actually grateful for the life changing lessons it has taught me. I've had some unhappy times but, mostly, I remain a happy person.:)

My best to you Barb, for your future and to same for you all.:grouphug:

doydie 03-29-2012 01:57 PM

I remember how I felt when I was first diagnosed, back in 1997. I asked neuro how long I had had MS and she tld me 5 years. When I looked back to those 5 years and all that I had done and I realized that I did it while having MS I knew that I could handle it! I had hiked the Grand Canyon while having MS! If I knew I had MS I never wold have tried it! I was diagnosed while in the hospital and while lying awake in the middle of the night I decided I wold take advantage of the neuro unit I was on. I asked to read some nooks from their library. Wow, that was a mistake! The books they had on MS were archaic! The DMD drugs had not been invented, treatment was sympton treated such as aspiration pneumonia which of course one with MS would get because of how bedridden you would be. You got bedsores from sitting in a wheel chair. So when I was discharged I got on the internet! I felt much better.

Treatment is getting better. I am glad you are retiring. I feel as good as a do at this time in my life because I am retired. Retirement allows me grandma time!!!!!

Dejibo 03-29-2012 05:20 PM

My 5 years was on the 26th of this month. I knew you and I were neck and neck.

Happy Anniversary.

I applaud everything you said. :hug:

Becca44 03-29-2012 06:39 PM

Quote:

Originally Posted by SallyC (Post 864979)
Happy Anniversary Barb.. You've come a long way baby - have a Virginia Slims..:D

Sally reminds me!!! I forgot the MOST IMPORTANT part: Happy Anniversary Barb02.
Thanks for making this landmark day of yours a positive one for others as well.

becca


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