Personal History & Progress posts…. wondering

[A Friend]

 

Friends,

There are people who find my name/number on a local hospital's support group list, and call me at home seeking information about treatment related to their diagnoses. These are people who have usually gone the route of the many meds that only made them worse, and are looking for something like AP, even if they don't know about it.   In the list of things I usually share with them are several related web sites and boards, especially Road Back and rbfbb.  

Quite a few of these people have Fibromyalgia (FM) and/or Chronic Fatigue Syndrome (CFS), but do not realize these are two of the many diagnoses under the Arthritis umbrella (of which I've understood number well over a hundred). If any of our group has FM or other dx, the newcomer would not have to search quite as hard if they are new to the board. (But, when using the Discussion section, our profile does usually show this, and this is very helpful.)

Under the stories and progress notes, am wondering if a diagnosis can now be added to those Subjects or Descriptions where it is not given, so if anyone new comes to the Board looking for a story about a specific illness, it can readily be found? 

If the Subject cannot be edited to include a diagnosis, do you think it would be good for us to click the “edit” tab and add the diagnosis on the first line of the post? 

Just brainstorming here, but personally I believe it 'could' be helpful.

AF

[Trudi]

[user=28]A Friend[/user] wrote:

 Just brainstorming here, but personally I believe it 'could' be helpful.

You might have something there.  When I first found this board, I read a lot of testimonials.  I'd be clicking in and out looking for the ones with rheumatoid arthritis, which is what I was then looking at–today it would be Lyme.  Noting up front what the diagnosis is, would definitely be helpful to a newbie.

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=28]A Friend[/user] wrote:

If the Subject cannot be edited to include a diagnosis, do you think it would be good for us to click the “edit” tab and add the diagnosis on the first line of the post? 

Hi AF,

As far as I know, the subject lines of posts can't be edited, even by Admin. I think the Progress Thread would need to be re-started and the old one deleted in order to have a new subject line inserted.

Great idea, though! Would be much easier to sort through member progress threads by diagnosis, rather than by name. We're looking at this issue on the main site for the Testimonials section, too, and hopefully it will all be much easier to navigate when the new-look site is in place.

Peace, Maz

[Eva Holloway]

Yes AF, I think this would be a great idea, but we need to let the newcomers know when they write their personal history to also add their definit diagnosis in the titel aea.

Eva:D

Eva Holloway

[tainabell]

Huh.  Before I was diagnosed with Lyme, I didn't HAVE a diagnosis.  One doctor once told me it was “unspecified inflammatory arthritis” but no one ever called it rheumatoid arthritis or osteo arthritis or lupus or fibromyalgia, or anything like that.  My mom kept saying to me, but what is the DIAGNOSIS? And after something like 14 doctors, I still didn't have one. 

So anyways, maybe adding “tags” to each post might be helpful, like the way blog posts are tagged.  Tag each post under a topic like minocin/nutrition/lupus, etc.  And then you can multi-tag certain posts.  So it might fall under many categories at once.  I'm computer illiterate, so I'm not sure how that would work, but it might be helpful.  But just remember….keep a category for “unspecified illness” for those weirdos like myself out there!

[Author]

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