Stats on "Who is Diagnosed?"

[shoshin]

Just for the heck of it, I stuck this in Excel to see what would happen. A few interesting, but not surprising things emerged. For example, most of our members are newly dx'd with almost three quarters getting their dx in 2007 or 2008.

A somewhat more surprising trend is that 56% only saw one neuro before getting dx'd and 36% got their dx in less than a year from symptom onset.

The majority of members have RRMS. I have separated out the ones who are officially RRMS, but have doubts or just have that dx for insurance purposes by denoting them as RRMS (?). 39% have RRMS and 28% have RRMS with doubts. A further 19% are not sure what kind of MS they have.

The most popular DMDs are Copaxone and Avonex, but a larger number (28%) is on no DMD than on any individual drug. Two people are in clinical trials.

I am going to put the info in tabular form below and try to post some pie charts to my photo section.

If people think this is helpful, I could probably do something like this for the limbolander post.

DATE OF DIAGNOSIS

1979    1   3%
1986    1     3%
1993    1   3%
1994    2   6%
1998    1   3%
2005    1   3%
2006    2   6%
2007   11 31%
2008   16 44%


TYPE OF MS

not sure         7 19%
chronic
  progressive     1 3%
PPMS         2 6%
RRMS       14 39%
RRMS (?)       10 28%
SPMS         2 6%


DISEASE-MODIFYING DRUG

none                 10   28%
Avonex           7   19%
Betaseron           1     3%
Copaxone           8   22%
Rebif                   5   14%
Rituxan           1     3%
Trial (CombiRX,
  Copaxone and
  Avonex)           1     3%
Trial (FTY720)      1     3%
Tysabri           2     6%


TIME FROM FIRST SYMPTOM TO DIAGNOSIS

less than 3 months   8 24%
3 or more months,
  less than 12 months   4 12%
1 or more years,
  but less than 2           5 15%
2 or more years,
  but less than 3           2   6%
3 years                   1   3%
4 years                   4 12%
5 years                   1 3%
8 years                   1 3%
9 years                   1 3%
10 years                   2 6%
17 years                   1 3%
20 years                   2 6%
22 years                   1 3%


NUMBER OF NEUROLOGISTS TO DIAGNOSIS

1    19 56%
2 5 15%
3 3 9%
4 3 9%
5 1 3%
6 2 6%
8 1 3%

CAVEATS

If people were diagnosed more than once, I used the info from the first diagnosis. If people have used more than one DMD, I listed only the current one. I did not include people with a dx other than MS. Some people did not answer all the questions (or at least I couldn't identify their answers) so I just skipped those.

sho

[shoshin]

The main places I know of to share docs are GoogleDocs (and everyone would have to have an invite to edit or view) and hotshare.net, which would only allow downloading so we'd have to do a new upload every time we edited it and make a new pointer. Or maybe medhelp would be willing to host it somehow, but I don't know what the technical or security issues would be.

It would be nice to put the spreadsheet up so people could see it, especially since there were some places where I just sort of guessed at interpreting what people said so they could correct me. And it is a succinct picture of where everyone's at..

I could certainly put the stats in a health page and link back to the discussion if that would be helpful.

As for the other question about asking about when people first saw a doctor for their symptoms, maybe we could just do a follow-up question and ask everyone to respond again. I think there were some other possible follow-up questions in the MS and limbolander threads so maybe we could pull some of those out, too. We could add the question about first symptoms for example.

sho

[Quixotic1]

Tahnks so much.  I was going to plug all of these into Excel mainly so I could have a quick reference to people's stories.  Then I was going to try to find somewhere to put the file so that everyone could access it also.  Does anyone know of a site where we could put this (the spreadsheet)?  We would be adding to it all the time.

I am so glad you pulled the stats form it.  I think it would find a place in a health page which could link back to the Discussions and also to the spreadsheet.

I am going to start another survey for those who are members but who have recieved alternate diagnoses, Spastic Ada, Speechgeek, Dowma, Wonko, SOONERMOM, Bearsmum, our people with Cervical Spondylopathy, Wanna, etc.  I'm so sorry I forgot to include them!!

I also wished I had included the question about legnth of time from first complaining of symptoms to diagnosis along with onset of symptoms to diagnosis.  Some people lived with their symptoms and did not tell their doctors.

Any thoughts about solving this?

Q

[doublevision1]

Nice work, Sho!  I love stats too.

Wouldn't it be great if Medhelp developed its own app to perform this function?

[shoshin]

Well, I see that I shouldn't have left any of the tabs from the copy-and-paste from Excel. It looked all right before I posted, but now they're way off kilter. It wasn't too bad to put in Excel.

sho

[Lulu54]

What fun to read those stats in a different way.  Great job Sho.  That's a lot of entering information to get Excel to spit it out..... thanks.  Lulu