Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diagnoses

You're the clear winner, Gerri! But when I read that, I was struck how that description could apply to so many here and it reinforced the danger of trying to diagnose from the printed word.

My last rheumy spent a long time feeling my joints. He was looking for a "spongy" feeling you get from hidden inflammation. You can't get that from books or the internet.

Wendy

My initial reaction to that would be:

Supporting someone effectively requires an understanding of what that person needs. That could be any number of things - a straight answer to a straight question, a gentle push, a big kick up the AS! ,a shoulder to cry on or a voice of reason etc etc.

This is almost impossible to do unless you are face to face, in my opinion.

I have been trying to support someone from a distance (over the phone) over something ongoing and painful. It is hit and miss to say the least.

When I have been in the company of this person, however, and am experiencing first hand the emotion and day-to-day living with the problem, my perceptions of the problem and way of supporting the person are completely different. Not to mention clarity in what is appropriate and needed support.

I always think if in doubt... ask lots of questions before you jump in with both feet and potentially flatten someone - so to speak.

Bad advice can be worse than no advice at all.

Always be sure of your motives.

Never underestimate what effect your words can have on others.

Ok, that's it from me.

Good points, Tink. I'm hoping others will jump in.

i hope i stay on subject here..
my take on this subject also with some thoughts on your all's replies.
i think this disease and others like it are a living nightmare that we cant awake from. Dx or not, pain is pain, support is support, even if its not the answer/reply someone is seeking.
we all have the right to live our life the way we want [to a certain degree...you know what i mean]. if that means we doctor ourselves with knowledge/research, look to 'professionals', or a combination of both. what ever fulfills us is what we should be doing. in the end...all that really matters is ..'are you happy?'

also, the fact that most of us have been failed by doctors at some point so its, i feel, only natural to seek your own answers. the only one who truly knows your pain is you and its instict that we fight for our survival.

Thanks, Wendy.

Just thought I'd see what the word actually means...

Dictionary definition:

I couldn't agree more...as long as that happiness does not infringe upon the happiness of those around you...

Hi Wendy:

I've asked my good friend Tarzan to swing in here, and give his perspective to those questions you just made, and added two more, relevant from earlier threads:




TARZAN: QUESTIONS GOOD! OTHER WAYS LOOKING, GOOD!



TARZAN: TARZAN NOT UNDERSTAND QUESTION!



TARZAN: DISAGREE GOOD!



TARZAN: QUESTIONS GOOD!



TARZAN: TARZAN NOT UNDERSTAND QUESTION! WONDER IF WHITE WOMAN DRINK FIRE WATER?!

(new question):
Is it okay to characterize someone else's illness as "moderate" "severe' or "slight"?

TARZAN: JUDGING BAD! OVER INTERNET, MORE BAD!!

(new question):
Is it helpful to suggest to other people that they should stop searching for their own diagnosis, and simply enjoy life?

TARZAN: TARZAN SAY EACH MONKEY MUST MAKE OWN CHOICE!!

Dow, are you reading the same posts that everybody else is? It's gotten so radical here that you can hardly say anything anymore...how are we supposed to talk about AS if you get mad everytime we talk about AS...

Hi Wendy,

"I was struck how that description could apply to so many here and it reinforced the danger of trying to diagnose from the printed word."

I have MS & Lupus symptoms and tested positive for the definitive test for Lupus (had high DsDNA). Found out recently that Porphyria, is the only other disease that will give a false positive for the definitive test for Lupus. So many of the autoimmune diseases are so intertwined.

My MRI showed no MS lesions. My neurological symptoms are common for MS, Lupus and Porphyria. My Lupus symptoms - the malar rash, the false positive test for Lupus, and many others are all common with Porphyria. My doctors are stating that most likely I have Acute Intermittant Porphyria, with porphyria of the skin. Until Megan mentioned Porphyria, I had forgotten all about my sister diagnoses of the disease. Then I did research, and then mentioned Porphyria to my Rheumy, who ran with it.

Try to get a diagnoses when doctors try to use the written word to diagnose. Not many doctors know about Porphyria. Many doctors see my symptoms - so I get bounced back and forth with the Lupus and MS testing. Finally I believe I am on the right track, even though I might have to go out to Alberta, to a specialist for Porphyria (specialist away to Africa until end of June) and my Derma unable to do UV testing until end of November.

My Spondylitis has been diagnosed. (PsA or AS) still up in the air. Likely going back to AS. Have visiable damage at the SI joints, and I am HLA B27+.

Hugs
Gerri

I keep looking at Kev's post and keep thinking...my names not in there...my names not in there..sheesh you think you know a guy, tell him your deepest darkest secrets and he tell me I am his BFF and then when it comes to putting it down MY name is no where to be found...maybe I will respond to the post later once I hit the names I simply could not get past it