Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group D.I.S.H. is called (ahem) SENILE A.S....

D.I.S.H. is called (ahem) SENILE A.S..

I JUST READ IT..

Why in the world, with several fused joints, chronic pain, for 45 years are they so stinking afraid to say I have A.S. ????

I do see where the muscle stiffness is so prevelent,, but cripes what was going on all these years?? I am having trouble swallowing, breathing, c-pap, I am border line, all these are classic. I had a heart attach due to lung impairment, all of this fits,...

So I got old people's disease! What did I have when I was 14 and in tears because of the pain??

Lord luv us, Lon - don't'cha know? Called 'brain fever'...

Suggest that a ***Strongly worded confrontation may help!

Set it all out, 1,2,3 - ordered development of events and 'what' was happening to *you - on thorugh the years Then ask em: 'So, what was it then, 45 yrs ago, as opposed to now: when we were looking at AS then, then 'what' are we so 'suddenly' looking at NOW?...???????' Your 'considered opinions' (hmmmm) are nonsensical, and contain NO medical value, what-so-ever!'

Insist on a well developed answer. With back-up medical material - and don't forget YOUR back up relevant material - comb the files and comb the internet.

Go get em Lon - enough of this blathering around with a load of clonking idiots. How b...dy dare they?

Set Bruno on em, the whole hasseling bunch.

Bah!

argh! between jimmy's insurance company and your doctors taking away the AS dx......too bad if they want to take away the AS dx, they won't take the AS with them as well!

molly has good advice as usual, i've got no advice, just warm thoughts.

this is why i've been trying to get a definitive dx before too long, as i'm only 47 now, and when it all started 35, but the longer things go on, the more they will be able to just say "old age", and you had a dx and still they are trying to say that, grrr!

Lon, I agree with Molly, too. Make a time-line of your experience since you were a child. They must have most of your medical records, so point to that spot when you were 14 and point blank ask them if it was old person's disease then. Point to the spot in your 20s, 30s, 40s, 50s and on. Make them justify their determination that you have old person's disease.

Good grief, just makes me want to spit!!! The disrespect implied is unbelievable. Grrrr. Lemmee attem.

Agape,

Molly,
I wish, we could sit for a bit have s spot of tea, or a soft drink and just chat. Yea, you are a good friend! We love you here and do look forward to your posts!
Thank you

Sue, as You speak, I can see the sad look on the Rheumy's face. She was looking for x-rays, there is not intercom, no pager, she had to get up walk down the isle and gett he nurse. She gets back, says, "I cannot beleive that there is no intercom in this building!". I say; "well, your the boss, get one put in!". She says, doctors are no longer the boss, we work for the company that owns the building....

Sue - one site, quoting nearly 24 doctors said that DISH is a
"tortuous" twisting of the laterial..... muscle in the back. Well, I have alwasy had more stiffness than most AS people. But I have also fused in my teen years..... which is not DISH.

Dear Kat,
Hmmm, the longer I think about it, the madder I get.
Yes, the stiffness seems to fit, but the childhood pain, and back fusing, changes in x-rays through the years, does not fit DISH.

You ladies are giving me a head of steam.
But, I do think I will wait until after Tuesday, before I confront the matter. He may use a bigger needle....

If KA is to be a useful support to me, I need to be able to trust everyone's statements about their diagnosis and treatments. Lon - I appreciate very much when you tell us that they are changing your diagnosis. Autoimmune diseases are very complex and I think it helps us to remember that. I love your honesty about what the rheumy is telling you.

DISH is a very serious disease, just as AS is and I don't believe it is an old person's disease. The other person I know who has it is not old either. Doing some more resarch yourself and making a list of your symptoms and, as Kat suggested, a time-line may be helpful. You could also ask for a second opinion.

I tend to think it's good that rheumys don't jump to conclusions and are willing to think outside the box and consider other possibilies. The only time I don't think that's ok is when they are trying to deny someone their right to disability payments (as in Jimmy's case).

I also think it's important to recognize that back pain and tendonitis may not alway mean autoimmune. There are many, many causes of these things.

I don't blame you in rhe slightest. He might switch to one the size of an 747 plane exhaust!!!

Warm hugs,

Wendy,
A serious post....
I found the "senile A.S. on one of the sites, I iwll have to look again. It was in a dialogue aobut the disease, in a conversational way. But the idea that elderly people get it, is making me more up set.
I will do the journeling, but I had nearly 4 pages of history filled out before I got there..

Could it be that many people think of AS, in only it's classic fused state. The guys with the fused necks, hips and spine. Where I have 3 fused lumbar / thoracis, but my wrists are very affected..

the amount of stiffness and pain was said to be from Fibro; that has been a given for 15 years..... and with DISH: i do kind of feel like giving up.. on this fight to stay active.

Wendy, thanks. How is the week going / ferry ride?

Jimmy may be too nice of guy... Lin says she is going Tuesday.