Hi all! I hope this day treats you well. I came across this booklet of info on Sjogren's. It's the most comprehensive I've found on the web. Please note that it comes from a bladder disease website...BUT please don't be turned off by that. That part just seems random. I came across this info yesterday and wanted to share it with you: http://www.painful-bladder.org/pbs_ic_ass_dis.html. Have you already seen/read this? It's from a bladder organization but the document itself focuses solely on Sjogren's.
Hi Casey/Kazzcase excellent find thank you.Appreciate your hard work in finding and verifying sources - I will send this link to the 15 plus medics who have examined me and failed to reach any diagnosis but rule out sjogrens as I am sero negative. Chapter 19 is particularly useful and together with my refs to Robert fox website will give any members a good understanding of the disease and better understanding thand 99.99% of medical professional sadly.
I was referred to a urologist becuase I have developed cystitis as well as SS. He said men don't get interstitial cystitis probably your age and prostate gland. I said prostate is fine had been checked I have interstitial cystitis as a result of Sjogren's. He said "I know nothing about Sjogren's nor would 798 of 800 of my colleagues in the UK but I don't think it's linked to it anyway even if you have it there is no treatment and no one knows what causes interstitial cystitis"- I said there is low dose cyclosporine only proven treatmentand i.s. is an auto immune disease read up the research and left! Again my wife heard the "conversation" Anyone wonder why I think medics are quacks?
Assybish...totally understand why you refer to them as quacks. I personally like to call them ding dongs. ;) I'm sorry for your difficulties. My rheumatologist said my burning mouth has nothing to do with the primary Sjogren's I have...YET, sooooo many people with pSS experience it too AND I've had several specialists confirm it's part of it. It saddens me...BUT, I do think the more we all connect, the more we will help each other manage it. Praying medical professionals start taking this more seriously.
totally agree with you but we need more than prayer we need members to keep hassling their doctors and politicians - get them to read this forum! Tell them to wake up and earn their 6 figure salaries and put the threads of the research together and stop pretending it doesn't exist or is only a minor "women's complaint"
Funny most doctors and politicians are male - wonder if that's why they don't won't listen?
How many diseases have been put down to hysterical post menopausal women?
As i ask the rheumatologists if it is a womens disease why do men and children under puberty get it????
Agreed!! I am a 32 year old female. The other day I went to a compound pharmacy and the pharmacist/owner asked, "How'd you get this? That's an old lady disease." I wanted to smack him. They just don't get it!
assybish said:
Thanks Casey
totally agree with you but we need more than prayer we need members to keep hassling their doctors and politicians - get them to read this forum! Tell them to wake up and earn their 6 figure salaries and put the threads of the research together and stop pretending it doesn't exist or is only a minor "women's complaint"
Funny most doctors and politicians are male - wonder if that's why they don't won't listen?
How many diseases have been put down to hysterical post menopausal women?
As i ask the rheumatologists if it is a womens disease why do men and children under puberty get it????
This is very good info, and if you have no objections, would like to share some of this with my friends and fellow members of the Fibromyalgia community here on BF.
The most surprising ingredient here for me was the link of Raynaud's to Sjogrens, NOT to RA or SLE, which seem to be the only 2 diseases they mention this with. They need to see beyond those two diseases and include some of the others that are just as serious, and in some areas even more prevalent! My Rheum tells me that PsA is the most common autoimmune arthritic disease in this area! Both of my parents and the general population are German and Dutch, (immigrating through Baltimore harbor) so there is the European connection, however in the info I posted about different genes for different races being activated, and in the genetic research info given by SGoddess, the Chinese have a huge population who suffer from Sjogren's.
I wonder if my Rheumatologist knows this? When he found out he was also treating a maternal cousin for PsA, he jumped out of his chair and made note in both records, as he always says it's genetic! Guess I'll put this on my list for him!
I am constantly taking him and my GP info, both are always eager to get it! Good sign!