Yes I have had 5 or 6 full bloods before trying this SJO.
I just wanted to make the point for any other poor people that THERE IS NO 100% test for SS whatever other members and marketeers may say so you may have SS but test negative and be told it's in your mind ( ok so explain the bleeding urticaria every night! or the irritable bladder or the Schirmers of <3mm!) So all reader's of this forum " if it looks like a dog smells like a dog and sounds like a dog it's probably a dog!"
Personally it is a real bummer as being male no one believes I have SS anyway!
But whatever as there is no treatment for primary SS.
My mom had ME fibro Hashimotos and type2 diabetes so there's the genetic link.
Hope the office suites are helpful to you in your wonderful work as a mod - greatly appreciated especially with your own health issues.
Sounds like Sjogrens to me. Have you tried using Xylimelts for your dry throat and mouth? They taste good and have been a lifesaver for me. They adhere, temporarily, to your gums. Apparently they help you produce more saliva. I would try a different Rheumatologist. You might want to look on Healthgrades.com to find one that is any good. I have not had a whole lot of luck either. For your sinuses I am assuming the doc told you to use a sinus rinse and nasal spray frequently. Look at the list of products recommended on the Sjogrens Foundation website for specific brands.
Having a diagnosis is a good thing, as long as you can find a good doctor to help you. Good luck!
As I often reply, I have no knowledge of labs, won't even guess. I rely on you, joshedu, kaz, and a few others to help members with labs, and they will all agree that there are no specific tests for Sjogren's, (as did Ovisaies) and offer no good explanation why some who clearly have autoimmune will never show up as anything but negative on whatever these generalized blood tests are they run on us!
Thank you, free office will be of tremendous help to me with the many groups I help to moderate! The links I have tried to bring up in the past gave you a free month, but wanted your credit card first! We all know what it's like to cancel one of those deals!
I don't have a choice on what rheumy to go to as I am on state medical. I can only pray he is better than he seemed and was only distracted by running so late (i got to see him 2 hrs after my appointment time).
I can't even use the sinus rinses because even they cause my nose to bleed and create serious headaches. I've even tried cutting how much solution is added to the water by half and it still made my nose bleed. I can live with a chronic illness as long as I know what it is. A diagnosis would take most of the fear away.
Being new, I have no idea what all the initials are that you guys are using.
libre office, aka open office is 100% free. I have used it for years. it is a full office suite.
There are over 120 auto immune dieseases AI and in my opinion quite a few more as yet called coronary artery disease, depression type 2 daibetes etc that aren't recogniced by mainstream medics.
FM = fibro myalgia
RA rheumatoid arthritis
ME myalgic encephalitis
MS multiple sclerosis
PSA psoraic arthritis
etc
I can't comment on your medical team as I am in th UK but here I am on "state medical" and have changed rheumatologist 5 times as they were rude incompetent and uninterested by turns. I guess if you shout you could do the same in USA athough I do know that the republican camp wouldlike to scrap healthcare like our Conservatives ( same tossers = rich and want to privatise verything so tjheir rich mates can get even richer on our ill health).
SK some of the people you mention have said SJO is absolute and disagreed with me on this forum. I have just got an email from th chief researcher at IMMCO who agrees with me that 10-15% of clinical SS show negative on theor panel of tests. WOOF WOOF :)
HI Jonchri - I have liver and kidney and pancreas -- and stomach involvement. It sounds like you probably also have those -- I would get them to check your pancreatic enzymes. I was taking those (vegan ones for me) and my doc added some help for my stomach recently - and bingo. Now I feel better. SS dries up the saliva so digestion hardly happens in the mouth, then it hardly happens in the stomach because that gets dried up, then the poor food goes past the pancreas and doesn't get hardly any help there either -- and then you might not even be emitting enough bile......I went from 114 pounds to 88 pounds in just less than year. Now (fingers crossed) I think I may be able to gain a pound or two now instead of losing because I needed more than pancreatic help we just found out.
although i can't remember exactly where, i too read that not everyone with SS are positive on their blood panel. I wonder if it is possible to have a false positive (wishful thinking as I am positive on both SS markers).
SK,
if you are in need of a free graphics program, gimp has been around for years. http://www.gimp.org/downloads/ it may not be quite as loaded as photoshop or the other expensive programs, but it is a good one and FREE.
DLT88,
so far as we know, only my liver is damaged (even showed on ultrasound). They aren't too worried about my weight loss as i can use to lose a bit more. i just wish i wasn't losing because i feel sick. i just can't stand the thought of it taking years to get a confirmed diagnosis. ugh i just want to know what is wrong so i can learn how to live with it!
It is possible to get false positives for all AI and SS is one that is most often false positive. You say both SS markers but there aren't 2 SS markers SSA and SSB or anti Ro andLa as I know them in fact can be more indicative of SLE (lupus). It is unusual for both to be +ve in SS.
Sorry to be jumping in so late on this but I have had a heck of a day and I am grateful because it was really manageable for once.i seem to be out of my long running flare and I felt functional for a change.
Yes, Sjogren’s is a systemic disease. It progresses differently in different people and not everyone gets the same symptoms or organ involvement. I fluctuate between 3rd and fourth stage kidney disease but because it was diagnosed so late they were unable to biopsy to tell if it was Sjogren’s related. This year I developed pancreas issues which they now believe is autoimmune. My liver is also slightly enlarged. Be careful with meds. Be proactive and go to one of the websites that will tell you about drug interactions. Make sure your pharmacist knows about any organ involvement so that if a potentially harmful med is ordered they can pick up on it.
Your symptoms seem pretty typical to me. Everyone who posted here has some good info for you. When you are newly diagnosed it is so easy to wonder about and worry about so much but my advice is to find a doctor that you really trust and who communicates well with you. Be well prepared for your md appts by writing out a list of questions about symptoms and meds.
Plaquenil should hopefully make your life easier but it can take up to 6 months to feel a full effect. If you are worried about taking Zocar at the same time as Plaquenil talk to your md about an alternative for Zocar.
I hope I made some sense. This is a good place to come for help