[fallinthruthecracks]

hello all.

i am new. haven't been diagnosed with lupus yet. but have endured much drama. including being investigated by the health dept and having them call a special meeting about me to interview each of my 100+ co-workers individually to ask them if they wash their hands after they poop. yep. it's funny. NOW. but at the the time i was rather traumatized.

anyway, i've had lots of test results that point to lupus but my diagnosis is complicated because i have other problems as well. i'm on a quest for answers and have found lots of insight here so far.

thanks for that.

 

[Katharine]

Hi there and welcome

I saw your other post but couldn't think of anything intelligent or vaguely interesting that hadn't already been said :lol:

Anyway, hi and welcome. I hope that you find a way to some answers and less of a run around very soon. It must be incredibly frustrating. I was tired out just reading what you'd been through.

That incident with the co-workers, yes very funny now... but what was it for? Your protection? Very odd.

Katharine

 

[Clare.T]

Welcome to the forum fallin

You are certainly in a most frustrating and complicated situation and I am glad you are getting some help here. I suppose the investigation of your colleagues' personal hygiene habits was to do with the Hep A possibility trying to find out how you could have contracted it.
I think it's an excellent idea to get copies of all test results and to start your own health file with everything recorded. For one thing it helps to feel in control of the situation. Sometimes people realise that there have been mistakes and omissions when they start scrutinising and becoming informed.
When lupus or similar is a distinct possibility it can be well worth the time, effort and cost to see a top expert. Getting lupus ruled out can be as important in the long run as getting diagnosed.
Many rheumatologists are not well versed in lupus and can't think outside the box.

All the best and the best of luck
Clare

 

[onetay]

Fallin,
Welcome and your right at the time it would not of been funny but it is now. Glad you can laugh about it now. Like many other people lupus is not the only thing going on with them. I myself have a nice laundry list of problems. It is often hard to tell which one is giving you the most problems. Keep searching for the answer it will come in time and don't let anyone tell you that you are crazy we have all been told that at least once on the path to our answers.
Tammy

 

[Pink Pearl]

"Many rheumatologists are not well versed in lupus and can't think outside the box."
Very well said, Clare. Many of us have experienced the bumbling of an unknowing doctor who thinks they know it all. Those should head back to school to learn how to listen to their patients.

Welcome aboard Fallin.
Sally

 

[fallinthruthecracks]

haha! i've met quite a few of those doctors. definitely a lesson in restraint! at the same time, i think i've mastered that lesson by NOW. time for a new lesson.

i'm very hopeful now that i'm armed with information. i think i have 6 or 7 of the 11 criteria. but i'm pretty sure that at least 5 of them are documented in my records. because every time i got to the doctor they start randomly skimming through parts of them and reading some of them to me. the problem i think is that the totality of my records for the last 3 years would literally need their own room to house them. well, at least a closet. so i don't think anybody has actually looked at all of them. so i think if i gather up some highlights to bring to my next appt, it should be pretty straightforward.