It's not Sjogren's.

[lesleyjoy]

Hi there Lisa, I'd say nearly half of us here haven't got Sjogrens showing up in their bloodwork but most of us have it. Like the others say, it can take many years even decades for autoimmune conditions to show up in some people...frustrating I know.
If you keep a diary of symptoms with date etc and take it along to the rhumatologist, it may help.
I wrote down all my symptoms going back about 25 years and although my bloodtests were negative the rhumatologist said that he could see from the history that there was something autoimmune going on with me...plus it is in my family (Graves thyroid /hyperthyroidism). Of all the blood tests I've had over this period of time, only 1 showed up as indicating mildly Lupus, but that disappeared quickly   Many clued-up specialists know that you can be sero-negative and still have A.I's going on.

Good Luck,
Lesley (New Zealand)

[Wynter]

I am one of those people that have negative everything. I have seen two local rheaumies with no luck.

One of the rheamies I saw said something that I have been meaning to ask everyone about. He reviewed my labs and biopsy, performed a physical exam, asked the usual questions, etc. He told me I had sub-clinical Sjogren's and did not think my case was "inflammatory". At that time I could only be treated for symptoms. If I ever developed "inflammatory" symptoms later on, then there would be more aggressive treatment.

For the most part, I agree with what that rheamy told me. But isn't it the general thought that Plaqeniel is first line defense and is supposed to slow the progression and help relieve many symptoms ( I know each person's reaction to Plaqeniel is different). Do the docs only give Plaqeniel to patients that have positive tests? Are you that are seronegative taking the drug? I don't understand how it's supposed to work. I would like to try it because it might help me.

[JenJen]

Lisa-

I feel your frustration, and completely understand.  I am going through tests and having them come up negative but having severe neuro. symptoms.  I am sero-negative with dryness issues, but found a rheumy who prescribed Plaquenil for me because I have so much AI in my family.

I truly cracked up when you mentioned wanting a "Dr. House" to take on your case!! I said the same exact thing to my hubby the other day!    Where are Dr's like that anyway?  We want someone to test and test until they find the answer, not see you for 10 minutes then shrug their shoulders and say "come back in 6 months."   Come on, would they treat their own spouses that way? 

I would suggest to you what people have told me--go to a University hospital.  That is where research is being conducted, and usually a team of specialists review you & may know more about the disease(s) you are looking at.  The only problem is you usually need to have the doctor you saw before refer you there.  Sounds like from your symptoms that a rheumy and a neurologist would be in order.  I just went to my local neuro, the one who said "come back in 6 months" and told him "Look, my symptoms are getting worse.  I want to be seen at the University."  So he wrote me the referral, probably glad to get rid of me.

Big Hugs go out to you, and keep the faith!

[lesleyjoy]

Hi no I'm not on plaquinel although sometimes when I get these weird things happen, I wish I was  I don't have any muscle or joint pain/involvement (not for 11) years but I did go through a bad patch 12 years ago with it...weird eh! I was given the diagnosis of Chronic Fatigue syndrome but then got the dryness symptoms mid 2006, so it's anyones guess 

Cheers Lesley (NZ)

[salsen]

Lisa as  the quote goes " A rose by any other name ..."  (would still stink lol).  No matter what name they may ever give my problems the symptoms all still seem to be here to stay.  I have always had negative test results for a specific AI condition.  Yet here I am with raging neuropathy, stomach problems, dry everything, intermittent itching and cramping of the feet and legs, problem eye pressure, overactive bladder and the very latest optic nerve inflammation.  Going strong for some one who's test always fall into the normal range. 

Thank goodness I have doctors who take my problems seriously and treat each new symptom.  I'm not really sure how I would react if they actually put a label on it all or even that it would really matter anymore.  I have one doctor who has labeled it SJS and another who says maybe not. 

So I have made a decision to accept and treat the symptoms as they come along and try to get along as best I can.  On top of all my other issues I have had both knees replaced, carpal tunnel repair in both wrist and a thumb joint re-aligned.  All of this has given me a huge wake up call to just work with what I have and be glad it isn't any worse than what it is.  For your sake I hope you get the name that you need.  For me "It"  has become such a part of who I am now that there is no longer such an urge to name it.   

[Shashi11962]

Salsen, I actually had gotten to the point of not caring if I had a diagnosis or not too. After going through so many tests (most negative), I was just tired of the whole mess and was just content to have my symptoms treated, unless they got much worse. I stopped requesting tests and I haven't been to my neurologist (and MS specialist) in over a year.

Then this dang parotid tumor and associated swelling came along. When the ENT suggested Sjogren's, I had high hopes that at last this evil thing had a name, not that it really matters, but at least it would prove to my family that I'm not nuts. And when someone asks me why I'm limping or in pain, I would be able to tell them instead of having to go into a big long explaination that the doctors think I might have whatever, but we're not sure yet.

Like you, I've had a lot of other health problems in addition to WETHTI (WhatEver The Heck This Is) syndrome. In the past three years, I've been diagnosed and treated for early stage cervical cancer, I've had carpal tunnel release surgery on both hands (and neither surgery worked), I've had surgery to repair my very deviated nasal septum and soft palate because I have severe sleep apnea and thought that might help (it did), I have GERD and IBS, hypertension, metabolic syndrome, left heart ventricular hypertrophy, thyroid nodules, a tumor in my parotid gland - the dang list just goes on and on (and I'm only 46!) Until three years ago, I was very healthy. All of this just hit like a ton of bricks, especially the cervical cancer, which really taught me to value each and every minute of every day because life is fragile and a precious and wonderful thing.

[irish]

My gosh, you sound like a sjogrens patient. Sjogrens patients suffer from tendonitis anyplace in the body and carpal tunnel surgery is very common. Also, the GERD and thyroid problems are also very common. Have you been checked for Hashimotos which is autoimmune thyroid disease?

I was ill for 40 years and just got diagnosed at our state university in 2003. I then found a good immunologist who diagnosed me with the myasthenia gravis and hashimotos and severely low t-cells.

I am curious if you have weekness in your arms and legs that improves with rest. This can be a symptom of myasthenia. Also, if you have myasthenia or sjogrens a swallowing disorder can cause one to have more problems with the sleep apnea--especially if the soft palate loses muscle strength and doesn't stay up where it belongs. Have you ever had droopy eyelids or swallowed and had food go up into your nose? If you have issues like this make sure to see a neurologist and get checked for myasthenia gravis. They check the acetylcholine level plus the antistriated muscle antibiodies need to be checked. Negative acetylcholine levels are not uncommon in myasthenia. Good luck and keep us updated. Irish

[coopwall]

Lisa,
I just want to encourage you to hang in there.  just keep going back to the specialists, and try new ones when you can.

I had a friend who, like me, had no idea what disease I had for ten years.  She just cared about me enough to say, over and over, "Call the doctor back.  Tell them your legs still hurt. try a new doctor. they said you're crazy??  Screw'em.  Try a new dr. again!"  It was that inch by inch search that led me to my diagnosis of SJS and FMS.

By the way, tell each and every doctor you see for any reason, about your symptoms and pain.  It was my heart specialist who listened about my fatigue and sent me to a Sleep Dr.  I really benefitted from that.  I have Moderate Sleep Apnea and Restless Legs Syndrome.  Who knows which conditions came first, but at least I'm getting treatment, and I can still enjoy my life and work part time.

When I got my diagnoses, I could only walk a half of a block before my legs were in such pain, I thought I'd fall. Some good physical Therapy prescribed by the Rheumatoligist along with the right meds, made such a difference. 

Do you kick your legs in your sleep and wake up a lot?  If so, you should mention that to your docs.

Whatever you do, I wish you less pain, more joy and better health.

Coopwall