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-   -   question on some youtube videos (https://www.neurotalk.org/multiple-sclerosis/173317-question-youtube-videos.html)

KittyLady 07-17-2012 04:09 PM

When I was dx, I was 21yrs old. I thought the same thing as you, death sentence, wheelchair bound, cant take care of myself, in bed for the rest of my life.... ugh!! After educating myself, I was very relieved. MS is a horrible thing to get, but I learned that RRMS is the lesser of the evils.

TheSleeper 07-17-2012 06:06 PM

I first got ill in February of 2003, by December of 2004 doctors were telling me I needed to be in a wheelchair. I can still walk, if you use that term very loosely.

EricP 07-17-2012 08:15 PM

Quote:

Originally Posted by TheSleeper (Post 898410)
I first got ill in February of 2003, by December of 2004 doctors were telling me I needed to be in a wheelchair. I can still walk, if you use that term very loosely.


So I assume then that you got the worst of it as in Progressive MS? Or did something hapopen before the MS Dxx like a spinal stroke or status epelepsie or something?

That is harsh, sorry bout that.

It's amazing that we both have this thing yet some get hit so hard while people like myself aren't bad from the start. It is scary though because I here it can turn into all hell if it wants too.

I REALLY REALLY don't know if I can or even think about if it becomes worse lik ethat guy on youtube that is now a total quad within 4 years of MS.

I feel great right now(the humid, heaty weather right now really is messing with me...I'm dragging a lot, but it's not to bad.... To lose my independence....I don't think I can take that.

Stay strong, my friend and keep praying for a cure for this irritating, bastard disease.

Another thing I can't believe is how common MS is.... I've been meeting people in my town right and left who have it. It must be stopped and soon.

Sorry about the grammar and sentence structure....it is friggin hot hear today:cool:

EricP 07-17-2012 08:25 PM

Quote:

Originally Posted by KittyLady (Post 898377)
When I was dx, I was 21yrs old. I thought the same thing as you, death sentence, wheelchair bound, cant take care of myself, in bed for the rest of my life.... ugh!! After educating myself, I was very relieved. MS is a horrible thing to get, but I learned that RRMS is the lesser of the evils.


Oh I know! When I first started hearing MS this and MS that from my doctors I went on the internet to see for myself just how bad it is. Boy was I scared, you have no idea how scared I was to read about MS on the web, but I did.

When I read the symptoms it said over 80% WILL have incontinence and problems with the bladder control and sometimes bowel. THAT scred me the most and I quickly went out of my mind over it plus watching videos on youtube with people my age walking with walkers, canes, chairs..

In my mind I thought if I was told I have MS that it is over..... I thought of Richard Pryor on that show "Chicago Hope" wear he was pissing all over the floor and shaking like crazy... I started to cry and went into a mini depression even before the official word. I reallly thought I would end up like Chris Reeve and then die.

As I got educated though relief came....They told me to calm down, it can be managed and I'm not going to be a veggie and that I can still ride my bike and do stuff....

Some actually do turn into Chris Reeve over this thing...and I feel so bad for them.

EricP 07-17-2012 08:28 PM

One more thing.....My legs are in such pain...I don't think it's the MS, bu tit is really hot and humid here in NY right now...I mean exxtra extra humid.. My left leg hurts like when it falls asleep...kno wwhat I mean?

I don't think it's the MS as I did a lot of walking today and some biking....

TheSleeper 07-19-2012 06:08 AM

Quote:

Originally Posted by EricP (Post 898462)
So I assume then that you got the worst of it as in Progressive MS? Or did something hapopen before the MS Dxx like a spinal stroke or status epelepsie or something?

That is harsh, sorry bout that.

It's amazing that we both have this thing yet some get hit so hard while people like myself aren't bad from the start. It is scary though because I here it can turn into all hell if it wants too.

I REALLY REALLY don't know if I can or even think about if it becomes worse lik ethat guy on youtube that is now a total quad within 4 years of MS.

I feel great right now(the humid, heaty weather right now really is messing with me...I'm dragging a lot, but it's not to bad.... To lose my independence....I don't think I can take that.

Stay strong, my friend and keep praying for a cure for this irritating, bastard disease.

Another thing I can't believe is how common MS is.... I've been meeting people in my town right and left who have it. It must be stopped and soon.

Sorry about the grammar and sentence structure....it is friggin hot hear today:cool:

Once I got the correct diagnosis it was Primary Progressive . I don`t seem to have anything else wrong with me besides issues that can be attributed to MS.

Stay strong? Not a problem, I consider myself lucky. I was able to retire and had been around enough to know that chit happens, don`t whine and deal with it. So far it still beats the hell out of being dead. LOL

Lynn 07-20-2012 08:34 AM

Ya know we all have MS, but we all have a different disease. It affects eveyone differently, and no two courses of this disease are the same.

My doc thought I would be secondary progressive within two years and profoundly disabled within five years - based on clinical and MRI presentation. Here I am - albeit slowly sometimes still on two legs and mostly functioning well after 11 years.

Will it stay that way? Who knows? I might crash tomorrow. I know as a woman I am lucky enough to have a better prognosis, but even so.....we got a lottery ticket on our Dx day. We just have to wait and see if the odds are in our favour.

Lyn

Dejibo 07-22-2012 08:06 AM

yep, MS is like fingerprints. no one has the same set. There are folks running around with 30 lesions in their head and skip thru their day and then there are those who have 4 with severe sx. One lesion in the wrong place and your course is going to be different.

My stuff is visual, and cognitive impairment along with the MS hug. I do drag my left leg when I am in flare but between flares it is only buzzy. in flare I am blind, and cant function, but inbetween flares im challenged but good to go. I have one or two flares per year. Some folks have them every month.

Its like a box of chocolates, you just nevah know what yur gonna git.


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