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Unread 11-27-2012, 01:13 PM   #1
Kitty
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How fast has your progression been from the time of your diagnosis?

I've had several people comment on this lately and I don't know how to respond without going into detail....which nobody wants to hear.

I was diagnosed in 2005 but I've probably had MS for the past 20 years. Once I got the dx it explained alot of things that I had just accepted in the past as "weird".

That being said, I really don't feel like I've progressed at an excessive rate. The past 7 years have been difficult and yes, I've probably progressed more during these 7 years than I did during the first 15 but that's kind of par for the course.

I don't seem to have a response for those who say "wow, you've really gone down hill quickly" or "you seem to be getting worse". I know, it's not a nice thing to say to someone with a chronic illness like MS but you'd be surprised at what comes out of the mouths of some folks.

To me, it seems just the opposite. For years I wondered what was wrong and now I have an answer. And an explanation for some of the strange and weird symptoms I'd had for years but just never had an answer for.

Maybe I should just agree with them and say "yes, well, I do seem to be getting worse" and leave it at that. But I don't want to!!
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Unread 11-27-2012, 01:27 PM   #2
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I think I've had it since I was a teenager. My first major attack as a teen was 1991 or so (a little fuzzy that far back). My second major attack, and by far the worst which left me with some big lingering problems to this day was 2004. that Then my latest big attack which I mostly (but not entirely) recovered from was this year. That attack finally got me a diagnosis. In retrospect I think I had a few smaller episodes in between the big attacks as well.

So 13 years between the first 2 major attacks, then 8 years between the 2nd and 3rd attack. Over 20 years from what I think were my first MS symptoms and the diagnosis. And a whole lot of 'we're stumped' and 'its just in your head' in those 20 years.

I hear you on 'finally having an answer'. I felt like that at first, when LOTS of weird things over the years were suddenly explained. But now that I've had some time to absorb the diagnosis, I've decided I don't want this answer. Can I get a different answer? lol!

Since diagnosis, its been the 'you look so good' comments that I think get under my skin the most. I know people are just trying to be complimentary and so I keep my mouth shut, but I don't FEEL so good no matter how I look. However, reading your story, I am not looking forward to the day when I get the 'you've gone downhill quickly comment'. Hugs to you, Kitty.
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Unread 11-27-2012, 02:07 PM   #3
Debbie D
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I feel personally that I've worsened since the dx 4 years ago; but not serious compared to others here. I feel depressed about the things I can't do that I could 4 yrs ago
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Unread 11-27-2012, 04:20 PM   #4
Erika
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I measure my progression of this disease by what MS has taken from me...and given me as well.

My first go round was at the age of 17 when I lost part of my vision for a while. I gained appreciation for how I took things for granted.

At 18, transverse myelitis affected my lower half and digestion. I lost part of my intestine, some liver function and stability in one hip. I gained respect for what I put into my mouth and its consequences and some more appreciation for taking things like independence for granted.

At 25 another round of transverse myelitis took away the life that had been growing inside of me for 4 months; as well as any hope of ever bearing a child again.
I gained a deep appreciation for the support and love that two people can share in marriage.
When I then lost the feeling and use of my legs for a time, that appreciation of support and love grew deeper and expanded to include many others. When I regained the use of my legs, I also gained appreciation for the ability to assist others with compassion.

At 33, MS took away the ability to ride a horse beyond a walk (I was an avid and competitive equestrian up until then). When it also took away the ability to walk on my own for a time, I gained the ability to find pleasure and true joy in others' achievements.

Between 40 & 42 this disease took away the belief that all the answers to physical problems could be found in science. I gained a deeper faith & certainty in spiritual matters.

Most recently, along with the physical debilities that have been ongoing for the last 2 years, MS took away mental clarity for a while. I gained a deep appreciation of fear and hopeless despair; but through that experience, a deeper sense of compassion and understanding for others came forward.

In looking back and also forward, it seems that it is true that we often don't appreciate things until they are gone, but I also think that we sometimes miss the opportunity to appreciate and build upon what may come in their place .

With love, Erika
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Unread 11-27-2012, 04:24 PM   #5
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It's been a long haul for me, from age 23 to 1st DX-35, to 2nd DX-53, to now-72.

My greatest progression has been in the last 10 years..from 63 to 72, though. Went from walking with cane-walker-scooter. Can still pivot and balance myself but no longer walk.

I guess I was one of the lucky ones..
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Unread 11-28-2012, 01:53 AM   #6
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I was diagnosed in 2010 but my first definite attack was in 2004 (age 22). My eyesight is rather poor...I can pass a visual acuity test ok, although I do need glasses, but my colour vision, depth perception and ability to track moving objects are shot.

It's only in the last year or so that the sensory symptoms have started to become overbearing. It used to be occasional patches of warmth on my legs, now it's great swathes of skin on my arms, stomach and back that feel like they're being sanded back if even so much as a light breeze touches them. Not to mention the arm and shoulder pain that shocks me awake because it feels like someone is popping the joint out, and causes my hands to cramp so badly I can't use them. This year also marks the first time I have been hospitalised due to an attack - fortunately I seem to have recovered with only very minimal residual weakness.

Despite all this, I feel pretty lucky. I have long tract lesions running both sides from C2-C7 - the effects from that could have been a lot worse.
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Unread 11-28-2012, 08:05 AM   #7
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A late onset for me, I was 52 and lost my ability to walk normally in less than a year. Of course there were other issues and progression that pointed to MS, it took me 3 years to get an official DX in March of 2006.

I spent a lot of time on the internet doing research the first year and a half into my mystery illness, it wasn`t that much of a mystery to me, MS seemed the only logical conclusion, doctors really don`t like patients defining their own illness?

I don`t like it, but is it is following the expected path, so all I can do is deal with it as long as I can?
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Unread 11-28-2012, 10:49 AM   #8
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I have a tough time answering that question. I was dx in March 2007 so officially I have had ms for 5 1/2 years. However my neuro thinks I probably had it for about ten or more years prior to dx. My symptoms then were mild -- a numb foot and fatigue that could be dealt with by napping almost every afternoon. Then I had my first major relapse. For about one year, I really struggled to walk with my cane, experienced a lot of cog fog and pain ... For the past four years, my neuro says I am stable. I rarely use my cane at home, but do experience pain and some sensory issues.I need the cane when I am walking more than 100 yards (that is a guess), and it does hurt to walk that far. I have not had a major flare. Some days the hug is worse than others, but it never goes away. I remember when I was first dx that someone commented to me how I was going downhill rapidly compared to someone else she knew with ms. I was devastated. Now when people tell me that I am looking good I just smile and say thanks. They really don't want to know how we are feeling.

But to answer your question (today), I guess I have not progressed and I am stable
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Unread 11-28-2012, 11:58 AM   #9
Kitty
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Up until a couple of years ago my main symptoms were my eyesight and balance issues.

Now, it's my walking and especially my gait. It seems so much harder for me to walk anywhere away from home. My guess is because I have so many things to hold onto in my home and I'm familiar with the layout and conditions. When I go anywhere it seems like my walking takes a nosedive but I think it's just unfamiliar terrain and territory. The grocery store is the only place I feel comfortable in such a large area mainly because I have the cart to hang onto.

I just ordered a quad attachment to go on the end of my cane. It's not the largest one there is. It's flatter and made to give more stability and help balance. I can't wait to get it and try it out.

Here it is: http://www.amazon.com/Quadruple-Cane...4121787&sr=1-4
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Unread 11-28-2012, 12:28 PM   #10
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Hope it works for you Kell!!
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