How Long Have You Been Diagnosed with MS?

Submitted by art on Tue, 2006-09-26 12:03.

I don't have MS

6% (31 votes)

Less than 1 year

16% (88 votes)

1-2 years

15% (81 votes)

3-5 years

23% (127 votes)

6-10 years

16% (90 votes)

10-25 years

16% (90 votes)

25+ years

6% (33 votes)

My Diagnosis Is Uncertain

3% (17 votes)

Total votes: 557

diagnosis

Submitted by Graham(UK) on Wed, 2006-09-27 11:15.

The year of diagnosis is often taken as the start of MS, this then propels you into the defined established categories, R/R,P/P etc. So often it seems, when people really delve into their own medical history, events come to light that were probably MS related dating back many years prior to diagnosis. Although I was diagnosed ~18 years ago I think I can go back to when I was only ~8 yrs old, I am now 62 yrs! If this is a common/widespread phenomenon it would certainly ‘muddy’ the category waters – more than a little? Maybe the next poll could/should be – when do you think your first symptom/s appeared.

Re:diagnosis

Submitted by art on Wed, 2006-09-27 15:11.

I specifically phrased the question to capture diagnosis duration. I think I'll do a follow up as you suggested asking how far before your diagnosis do you think you had MS. Good one.

Re:diagnosis

Submitted by Anonymous on Fri, 2006-09-29 20:03.

Thanks. I'm very curious about this too. Andrea W

Re:diagnosis

Submitted by Graham(UK) on Fri, 2006-09-29 07:31.

For me the results of the proposed poll would be really interesting, thought about this many times over the years. It seems to me the disease process is so complicated and unknown that it doesn’t suit such a simplistic category characterization, but I guess science loves labels. Let me go into a brief history of myself:- 1/ Age ~8 yrs within a two hour period lost the ability to walk and loss of balance, next day perfectly ok – no explanation. 2/ Age ~20 yrs period of extremely brisk reflexes with some clonus, especially in the heat., resolved itself within a few weeks. 3/ Age ~ 30 years some eyesight problem, not dramatic, resolved within a few weeks 4/ Age ~42 yrs very slight weakness and small loss of some fine motor skills 5/ Age 44yrs diagnosis of probable P/P MS. Walking reasonably well until age 48, then gradual deterioration.. RTA at age 56 yrs – burst fracture at L5, wheelchair user since. Still in surprisingly good nick, considering! Consider this, I f the events at age 8,20 & 30 yrs were MS related would this mean I had R/R MS with an extended interval/lag phase, only to become secondary progressive at ~42 yrs?

Re:diagnosis

Submitted by Anonymous on Fri, 2006-10-06 14:05.

Interesting indeed. If I think back myself, it would seem that I have had MS related symptoms almost my entire life. Especially related to parasthesias (numbness, tingling, etc) and bowel/urinary issues. I also had these unusual "episodes" between the ages of 8 and 12, and then they never happened again. I would feel quite lightheaded and dizzy. Then all sound and light became muddled--it looked like the world was darkening around me to a greyish-brown color, and any sounds became muffled. I would have to sit down quickly because I was so dizzy and off balance. I was also kind of giddy, like I was drunk. This would last about 3 minutes, and then everything would sort of WHOOSH back to normal. These episodes were very infrequent. They were odd, but not disturbing. Later on in my life, around my early 20's, I would have problems with numbness that seemed to come out of nowhere. At 34, my first really worrisome symptoms started . . . from one day to the next. I went to bed normal and woke up with numb feet. They stayed that way until 18 months later (and terrible ataxia) when I was diagnosed with MS.

Re:diagnosis

Submitted by Anonymous on Wed, 2006-09-27 14:54.

Very good points. Especially since one popular theory is that one event happens early in life and lies dormant for years until the same, or similar, pathogen strikes later in life and sets off the MS. Or, maybe damage starts way before anything ever shows up--including symptoms and diagnostic indicators. Also, this poll IS important, since knowing when a positive diagnosis is made can lead to other important discoveries. Can't discount anything, no matter how insignificant it may seem.

Re:diagnosis

Submitted by rho sat on Sat, 2006-10-07 04:31.

I was told my diagnosis was "most probably MS" in 1993, when I woke up with a numb leg, even though the MRI that was taken "to rule out MS" showed nothing (yet). There was no treatment available then: symptoms worsened then resolved over a few months. My neuro said the only sure way to diagnose MS was at autopsy, and I told him he'd have to wait on that one. So the formal diagnosis wasn't given until an episode of optic neuritis in 2001. I imagine this kind of uncertainty in diagnosis date will affect just about all of us with onset in the 1990s or earlier. Art, is this why you're not trying to capture much detail on longer-term sufferers, keeping it to just 10-25 and 25+?

Re:diagnosis

Submitted by art on Mon, 2006-10-09 06:18.

The software the does the polls only has a certain number of slots for answers. These polls are just to generally get to know our readers and not to collect scientific data. Our repository interview is much more details (40+ pages!), this stuff is just out of curiousity.

Diagnosis

Submitted by dee9ball on Wed, 2006-10-04 12:47.

When I was diagnosed in 1998 MS was still in the very early stages of public awareness of this disease and it is so wonderful that now the public is much more aware of MS and more understanding the issues we face with it.

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