Hi Cricket,

Well, only 109 of that original 143 were re-tested, and it was only 4 1/3 yrs down the track. It was 12 yrs before they firmed up my dx.

Also, we don't know the basis on which those doctors originally referred someone for neurological testing. Some doctors just like to cover all their bases . . . which is one reason a person probably shouldn't be too concerned about it being MS just because they are being tested for it. Really, a lot of times a doctor is just crossing that option off the list . . .

Then, did they send those people back 4.4 yrs later because they were continuing to have neurological problems . . . or was it just to check how many still didn't have MS?

I agree, it would be interesting to know if they EVER got any kind of dx.

What would also be really interesting is following these people to autopsy. I wonder how many have MS then?

Too many unknowns to come to any conclusions, I reckon.

Cherie

It amazes me that people I know who've been dxd with MS have less sxs than me, and I suffer enough with them that I can't presently work, due mainly to gait and cognitive problems, yet my neuro's NP dxd me with depression/anxiety.
How does this mental disorder produce spots on my brain MRI? How does it make my foot drag? I know a woman whose only sx was numbness/ tingling on one side. Bam-MS dx.
It's so subjective...and so frustrating. I am not going back to the neuro...I will take his NP's dx and leave it at that, since I have had no other major sx pop up, other than new tingling in right arm. But can you tell I'm a bit frustrated? I also feel alone with it...poor me...

That's what I think as well -- but they manage TO reach a conclusion! Sometimes these studies really irk me.

I know what you mean, but this is the reason I like to post this kind of study . . . for the discussion that comes out of it.

Like EVERY study/trial, things are presented in the light that they want it to be, at least as much as the data can be manipulated. Unfortunately, we can't necessarily take things at face value.

Cherie

EXACTLY.

Not too long ago a new drug efficacy study was released. It came up in my news alert and I think it was posted here as well. I couldn't find the sample size anywhere I looked so I emailed the study information contact person to ask. That was almost a month ago -- as of this date, no response and I'm not holding my breath for one!

Thanks, Cherie, for posting that study and also for your thoughtful comments in this thread. Interesting stuff.

I, too, wonder what happens to these people 10 or 20 years down the line.

These study findings DO explain, I guess, why my neuros both closed the door on me after a one-year followup.

But it doesn't explain why that first guy told me I had MS in the first place!

Also it does not explain why so many doctors feel it necessary to explain the symptoms as anxiety, hypochondriasis, stress, depression, etc. This may be true in some cases, but effectively, what happens is that these latter things BECOME the diagnosis, sometimes with no more evidence of them than there is for MS!

So why can't they just say... "sorry, we can't explain your symptoms, they do not appear to be dangerous, such undiagnosable symptoms are a common occurrence, call us if anything goes badly wrong," end of story? Without piling that psychological **** on patients without evidence of anxiety/stress etc.?

Nancy T.

Mult Scler. 2008 Aug;14(7):985-7

Long-term follow-up of suspected though unconfirmed MS

Nielsen JM, Uitdehaag BM, Polman CH.
Department of Neurology, VU University Medical Center, MS Center, Amsterdam, The Netherlands. jm.nielsen@vumc.nl

OBJECTIVE:

There is no gold-standard diagnostic test for MS, and evaluation of present diagnostic criteria has almost exclusively been done in populations of which the vast majority is prone to develop MS. Patients referred for a potential MS diagnosis in whom ultimately another or no diagnosis is made are seldom reported in a systematic way.

We report, after 7 years, on the diagnoses made in a cohort of patients with suspected though unconfirmed MS.

METHODS:

We retrieved information on the current diagnosis of all patients who had visited our center between 1998 and 2001 for a second opinion concerning a possible MS diagnosis and in whom no diagnosis had been made at that time.

RESULTS:

Seventy-five patients (86%) could be retrieved and cooperated. In seven patients, a diagnosis of MS, in eight patients another neurological diagnosis had been made. In the remaining 60 patients, still no neurological diagnosis had been made.

CONCLUSIONS:

In potential MS patients seen in a tertiary referral center, the likelihood that a patient who is not diagnosed with MS will in the future develop a neurological disease is small. This study suggests that, in addition to playing a role in diagnosing MS, MRI can be helpful to exclude MS in clinically doubtful cases.

PMID: 18573831
Pubmed, Oct 25, 2008

Cherie
(thanks Agate)