question on some youtube videos
 

I've been watching MS youtube videos and what people are doing and all that. On some of them, in particular, this one wear this guy was DXed at 19 with MS and 4 years later he graduated college in an power chair, paralysis like someone who is quadriplegic.

It's been over a year since my official DX and I feel fine minus some numbness in my fingers sometimes and some balance stuff..still no walking aids...not even close and I still don't park in the handicap zone.

My question is....damn I am lucky? to have a very light case? seems some get full on ****ed with MS and get disabled very fast.

I've just never read a case where someone gets the Dx of MS and a few years later becomes power chair dependent..... I was....shocked.

Hi Eric,

That's right. Some folk have Primary Progressive MS. Others have spinal lesions that effect the use of their legs. See "Transverse Myelitis."

I have had MS for over 40 years (started very young) and I am stillstANNding and walking w/o assistance mostly.

Don't drive yourself crazy,
ANN

Apparently he had a chronic progressive type of MS. He may come to a platteau, however, as many progressive types do and be ok in his wheel chair for living life ok, for a long time.

Yes, if you are starting out RRMS, then you are lucky, as I am. I started out RRMS(lite) in 1964...no meds...turned SPMS in 1998ish and at 72, am still going strong. :p

I have transverse myelitis, and every minute is a game of roulette. I never know when a day starts out good (today did) if or when it will go bad. I meet many MS'ers here in the Pacific Northwest who are still out hiking and climbing and camping on the ground . . . but I can't even get up or down from the floor. I have known people with MS who were in remission the entire time I knew or associated with them . . . and I have known people with MS that my first knowledge of them was of stumbling, struggling, assisted, disabled.

Right there with you lefthanded on the TM roller coaster ride. Like others who have their own individual experiences of the ride with this stupid disease, we do what we can, when we can do it.
With love, Erika

Guess I'm lucky then.

On my rounds today I saw a woman coming out of the dollar store walking with those arm crutch things and her legs were just all over the place, arms going outwards ect ect. I didn't think it was MS, but mor elike Muscular dystrophy or something. All the MSers I saw before have altered walking gates, dragging toes and a bit slow on the feet, but I never saw one all over the place like that woman today. I was curious to ask her, but I was polite and just passed by.

Ive had MS for 20yrs now and would have a flare at least once a year, but they were so mild I barely noticed them. I became disabled from it this past October. You can live a long time and never have a problem. I stayed on my feet long enough to raise my 3 kids. Now I use a walker and cane to help with my walking but Im glad Im still on my feet, I just need alittle help now.

...maybe Cerebral Palsy? Also a very nasty and cruel condition.

With love, Erika

Yepp, forgot about that and a lot of them do walk like that. One thing with MS I am discovering, is that people don't see it in me...I don't walk funny I ride a bicycle and look healthy so people wonder if I really have it.

I was talking to this one woman (she said she was 70) at a thrift store and I sat down doing a "whew" it was hot. She says "you're too young for that, but perhaps everyone needs to have a seat whenever they can on a day like this"

Well then I told her I have MS newley Dxed, but had for a while. She says I looked healthy and all that.

Well I didn't feel like explaining that just because you have MS, doesn't mean you turn into a sceleton or your skin goes pale. I can now see where this is going as the years go on... "you have a terrible disease?...nah....yerr funny:rolleyes: Probably should put on braces and **** and hold a cane for the hell of it.....may as well get used to it I suppose. Nah, f'ck that.....

Sorry fo rthe language...it's humid ou there and I am quite crabby:eek:

Yepp I am eating all the right ways, doing my meds to the tee, doing research and crossing my fingers for a cure.

I'm sorry you became disabled from it recently, my friend.

When I first got word that I have MS I thought I would be immediatley in a wheelchair and if you read my first thread here....wearing diapers and all that.
Boy wa sI scared. I though tit would be like that and I guess some actually get it that hard, but I consider myself lucky that I officially have MS, that is solid, but it has been minimal in damage so far and the future looks good. It could of been a lot worse...a lot a lot worse.

Guess I'm kinda in the same position as Jack Osbourn....both lucky to not get diabled of fthe bat.

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.

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:

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.

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....

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

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

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.