Typical MS Patient

[mommy1]

The NP at our practice told me what usually happens is the person is dxg and after about 5 years the doctors office has to track them down and say you need to come in for a visit.

I am atypical.

[Jules A]

I'm not sure I believe there is a typical MS patient.

Your avatar is beautiful. The figure looks very strong and serene. Be well, Jules

[marybenes]

When I was first diagnosed, I saw my doctor every three months. I eventually went to a check-up every six months.

[rdmc]

The NP at our practice told me what usually happens is the person is dxg and after about 5 years the doctors office has to track them down and say you need to come in for a visit.

I am atypical.

That's hard to believe.

Well then they must not be on any meds, because my neuros have always insisted on 6 month visits, otherwise no Rx for DMD, or symptomatic meds.

[lemstar]

I am not on meds, and for that reason alone my MS doc wants to see my every 6 months, and wants me to have MRIs every year.

[BigA]

This is an interesting thread. I'm not sure that anyone knows what the average patient does, since a) there are people walking around undiagnosed and b) I think at both ends of the spectrum, people don't see their neurologist much.

In any case, whatever the true typical patient is or does has as much relevance as the average cancer patient or car accident victim. What good does it do anyone?

And, if your clinician gives you too dire a picture you get upset, but if they paint too rosy a picture, the same happens.

[Redwings]

I'm not sure I put much credence in what the NP said, either. But it isn't because there isn't a "typical" MS patient. Anything that can be plotted on a bell curve has a "typical" and a degree of certainty. The only variable that was mentioned was patient return rate, and that's very easy to track and analyze. So for that variable, within given parameters, there is a typical MS patient.

The statement is unbelievable for a couple of reasons. First, it's a vague, general statement for which no parameters were given. Second, there are limited reasons why that variable would be studied for any kind of classification of MS patients because patient return rate is so low after 5 years that there isn't much point in recalling patients then. It isn't productive to spend time and money recalling patients who have a low likelihood of coming back. So the offices that would do such long-term recalls would skew the results of the analysis. Perhaps if there would be any point in doing that kind of study, it would be less for identifying a "typical" MS patient, and more for showing from a practice management standpoint how few patients actually return after 5 years (and that's where the return statistics came from).

It's an empty and unbelievable statement if it implies that all things that might determine a "typical" MS patient can be known from a single variable, and because no conclusions can be drawn about those other variables.

[rdmc]

The NP at our practice told me what usually happens is the person is dxg and after about 5 years the doctors office has to track them down and say you need to come in for a visit.

I am atypical.

Something else just dawned on me. Maybe there's something about your neuro they don't like and after being diagnosed they go elsewhere

[techie]

Typical MS patient?
techie

[BigA]

Something else just dawned on me. Maybe there's something about your neuro they don't like and after being diagnosed they go elsewhere

OMG, that's so funny - but can definately be true. I left my first and 2nd Neuros. Also, a sympathetic Neuro may get the patients with the most serious disease, making it appear to anyone there that the disease has a worse than "average" course.

Unless we force doctors to put every person diagnosed ith MS in a registry, we may never know.

[gomer]

Careful BigA...........

U R sounding like a Big Bro.ther


Gomer Sir Falls-a-lot

[Redwings]

Maybe there's something about your neuro they don't like and after being diagnosed they go elsewhere

That's one of the major reasons why patients leave a doctor, and why successful recalls at 5 years are so low that it isn't worth trying. So, mommy1, if the NP meant that the usual MS patient in that practice gets diagnosed and disappears, that's a clue that you might need to pay careful attention to how you're treated there, both medically and administratively. Personally, I'd leave any doctor who tried to pass me off to an NP. And I have. I guess your NP would consider me a typical patient.

[BigA]

Careful BigA...........

U R sounding like a Big Bro.ther


Gomer Sir Falls-a-lot

that came out wrong Unless doctors become obliged to log every case of MS, we'll never have a true picture.

[BigA]

That's one of the major reasons why patients leave a doctor, and why successful recalls at 5 years are so low that it isn't worth trying. So, mommy1, if the NP meant that the usual MS patient in that practice gets diagnosed and disappears, that's a clue that you might need to pay careful attention to how you're treated there, both medically and administratively. Personally, I'd leave any doctor who tried to pass me off to an NP. And I have. I guess your NP would consider me a typical patient.

Interesting you should say that. At my clinic, the Neuros are always booked up for months, but "that's what the NP is for". I went to see the NP once, and it was OK. She's the go-to person for symptom management. In a way, that kind of makes sense, if you're between your 6-monthly Neuro visits. In fact, I kind of detected a little bit of that being the window washing of MS care. In fact, she is a good NP - I just didn't get along with her. I founder her patronising and she tried to talk me out of my usual MRI center to get one at their hospital. I just got the feeling that their dept got a kickback if the referred someone.

When I found out she billed the same as the Neuro (and I was paying the whole fee), I figured It's better to see the Neurologist in person. My Neurologist agreed, though everyone claims to be shocked, shocked when I ask why a NP bills the same as a Neurologist.

When I considered taking part in a drug trial, there was no trouble to book 2 appts with my Neuro. Overall, I am happy with the clinic, but I have to keep it in perspective.

[mommy1]

Sorry took off for the weekend. RedWings I was in between 6 mth visits and squeezed in (hence the NP) but my nuero also made it a point to see me when I was there. I needed IVSM for new leg weakness.

I found it strange that she said typical MS patients don't come in. I am atypical because I... what, relapsed? I thought that was typical of RRMS.

What goes on behind the scenes when they discuss cases...

TY Jules for liking my avatar