Author Topic: NOT Sjogren's after all...  (Read 8044 times)

kikil

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NOT Sjogren's after all...
« on: December 01, 2014, 09:21:47 AM »
The rheumatologist just phoned to inform me that I do not have Sjogren's because all of the tests were negative. (Blood tests and those nasty Schirmer's and saliva tests).

Great, that makes me healthy, right?

Let's see...rheumatism...eye doctor's diagnosis of dry eye...dentist's observation of dry mouth...and anyway I wake up every thirty minutes for a drink of water through the night because my tongue is glued to the roof of my mouth, so even I can say that is a dry mouth.

Also: dry ears, dry nose, blepharitis, and regular eye infections.

(I still do not understand what the point of the Schirmer's test is. The woman nearly poked my eyes out and stuck paper to the dry surface about ten times before it stuck. Is it any wonder that there were tears after that?)

Guess that means I do not really belong here.

« Last Edit: December 08, 2014, 10:04:15 AM by kikil »

Kathy57

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Re: NOT Sjogren's after all...
« Reply #1 on: December 01, 2014, 09:30:21 AM »
I don't take much stock in blood tests.  From what I understand, there is no correlation between severity and positive blood tests.  I think you are sick because your symptoms speak louder than your "tests."  Find a Dr. Who will treat YOU and NOT your blood work. 

Unfortunately that is easier said than done.

Hope you get some relief and help soon

Kathy
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sarahjane

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Re: NOT Sjogren's after all...
« Reply #2 on: December 01, 2014, 09:43:08 AM »
I second getting another opinion. I'm one of many on this board that is TOTALLY sero negative for all bloodwork and lip biopsy. I'm very lucky that my rheumy has given me the diagnosis following confirmation of neuropathy and autoimmune thyroiditis and I'm being treated accordingly. Please seek another opinion and no need to leave us!
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oliverid5

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Re: NOT Sjogren's after all...
« Reply #3 on: December 01, 2014, 09:46:58 AM »
kikil:  Have you read:  http://www.the-rheumatologist.org/details/article/5438851/Speak_Out_Rheum_A_PhysicianPatients_Experience_With_Sjogrens_Syndrome.html

I had the diagnosis for 1-1/2 years, tried switching to a new rheumy who said I did not have Sjogren's based on blood work and was forced to get a lip biopsy that confirmed diagnosis.  It just seems to all depend on what doctor you see whether or not they will be able to correctly diagnosis you.  Don't give up...no one knows your body and symptoms better than you.  Find another rheumy.

I always thought it would be nice if a doctor could live with me for a week and see what I go through.  How can they tell what you are truly feeling when they only give you 10 minutes of their time every few months.  And, when you tell them your current symptoms, they just shrug and say to try physical therapy.  Really???

Carolina

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Re: NOT Sjogren's after all...
« Reply #4 on: December 01, 2014, 10:08:42 AM »
Dear KiKii,

There is a condition called SICCA which means dry: dry eyes and dry mouth  It is treated exactly like Sjogren's at the entry level:  Salagen/Pilocarpine or Evoxac/cevimeline hcl for mouth and eyes (oral medication) and eye drops for your eyes.

There are no blood markers for Sicca.

And of course, as many here can tell you, symptoms of all sorts can appear and go on and on and on, long before blood markers appear, if ever.

So be patient, find the doctor who will treat YOU and YOUR symptoms, and not your blood work. 

Many doctors want only to treat people who are easy to understand, have clear markers and respond well to all medications.  There are a lucky few.

Most of the rest of us shop around until we get what we need.  We never get what we want of course, which is absolute perfection and compete absence of pain (joke!)

You are here if you think you can get help from us and enjoy our company.  Welcome.

Hugs,  Elaine
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Joe S.

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Re: NOT Sjogren's after all...
« Reply #5 on: December 01, 2014, 11:56:39 AM »
Sicca syndrome: An autoimmune disease, also known as Sjogren syndrome, that classically combines dry eyes, dry mouth, and another disease of connective tissue such as rheumatoid arthritis (most common), lupus, scleroderma or polymyositis.

I was told they were on in the same. A lot of us do not have blood markers.
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kikil

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Re: NOT Sjogren's after all...
« Reply #6 on: December 01, 2014, 12:39:19 PM »
Thanks everyone! This rheumatologist is the one who diagnosed my RA 5 yrs ago. I have had a good relationship with him, and he knows that was seronegative.

I have an appointment to see him on Wednesday and maybe I can have him take a look with me at the dx criteria for secondary Sjogren's.

cccourt1942

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Re: NOT Sjogren's after all...
« Reply #7 on: December 01, 2014, 03:56:05 PM »
Sicca "syndrome" is not an autoimmune disease.  It is a symptom.  However, MANY doctors (and I would venture to say all GOOD doctors) will treat these symptoms the same as SjS.  Taking info from this forum apparently the diagnosis of SjS is not necessary for all insurance companies.  I do not KNOW this nor have I heard anyone declare it, but those applying for disability for Sicca symptoms (alone) would have difficulty being declared disabled.  Let me repeat: I do not KNOW that.  I do know sicca is a symptom. (and a miserable one!)  If you found this forum you are part of about 99% of us suffering with it who come here!
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Jasper

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Re: NOT Sjogren's after all...
« Reply #8 on: December 01, 2014, 04:56:25 PM »
I agree with the others that one can have Sjogren's without having positive blood work.

I have had Sjogren's symptoms for decades, yet my blood work was negative for SS-A and SS-B in January 2012. (It was positive for ANA.) My Dermatologist at the time and my PCP  both said that I was fine and that I did not have an Autoimmune Disorder and needed no further testing,  even though I had many symptoms of Autoimmune Disorders.

In July 2013 I got to a Rheumatologist on my own. She did a truck load of tests and I was positive for SS-A at that time.

Perhaps you have just not converted to positive tests yet or perhaps there is some other reason you are negative for Sjogren's tests (as some others are).

Hopefully your Rheumatologist will treat your symptoms.
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Nugget

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Re: NOT Sjogren's after all...
« Reply #9 on: December 01, 2014, 06:24:44 PM »
I always thought it would be nice if a doctor could live with me for a week and see what I go through.  How can they tell what you are truly feeling when they only give you 10 minutes of their time every few months.  And, when you tell them your current symptoms, they just shrug and say to try physical therapy.  Really???

Well said.
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Head2Toe

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Re: NOT Sjogren's after all...
« Reply #10 on: December 01, 2014, 06:55:38 PM »
I feel your pain. 

I've told my husband several times over the past year:  If we win the lottery, the first thing I'm going to do is hire a doctor who will give me his/her exclusive and undivided attention to find out what's wrong with me - and - identify the best possible treatment.

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grammad97

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Re: NOT Sjogren's after all...
« Reply #11 on: December 01, 2014, 06:57:08 PM »
Hello kikil -
Please remember you the patient pay for the doctor's time and expertise.
Definitely advocate for yourself to get your symptoms treated. As the others have said many have symptoms but no positive labs.
It is frustrating to have to repeatedly explain your symptoms to a doctor.
Can your dentist and ophthalmologist send their observations and diagnosis to your doctor?
Don't give up! We are here to share information and give you a place to ask questions , vent whatever.
Breathe and hang in there.
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kikil

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Re: NOT Sjogren's after all...
« Reply #12 on: December 01, 2014, 08:50:07 PM »
I appreciate your comments so much, as it helps me to not feel quite so alone with this.

Actually, this is not the first time that I have had to advocate for myself with doctors (the same with asthma, epilepsy, hiatal hernias).

grmmad97: The eye doctor is in the same health clinic as the rheumatologist, and he can see the official diagnosis on his computer. I can even log in and see myself that it says 'Dry Eye Syndrome' / Sicca, so I know he can.

I believe I have a case for secondary Sjogren's, according to the Finnish criteria: 1. an autoimmmune disease (RA) 2. either dry mouth or dry eye symptoms and 3. one other 'objective' test, which could be an eye dr. exam using dye. (No need for positive blood tests, saliva tests, or poking paper in the eye tests.)

What the dr. told me about treatment: Use eye drops and chew gum. This dr. has always been very kind to me and listened to me before, so I will try to give him leeway here. I will come to the appointment tomorrow prepared and be thankful for the Finnish friend I found here who passed on the link to the Finnish criteria.

In any case, my GP ALWAYS takes my concerns seriously, no matter whether trivial or big ones, so I will keep on until this is taken care of. I'm not even seeking disability, just proper care.

Thanks again for your support!
« Last Edit: December 01, 2014, 08:53:49 PM by kikil »

gurs

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Re: NOT Sjogren's after all...
« Reply #13 on: December 02, 2014, 04:26:31 AM »
NO, NO, it doesn't mean you don't have sjogrens. To me, all those tests are useless. Seriously!! just find another doc who will treat you according to your symptoms. Labs can change from minute to minute, and they just don't know enough about autoimmune..bottom line.
Don't give up your quest..i know its frustrating.

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kikil

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Re: NOT Sjogren's after all...
« Reply #14 on: December 03, 2014, 10:02:17 AM »
At the appointment today, I asked the rheumatologist whether he thought it could be secondary Sjogren's. I brought with me a printout of the Finnish description. He said I did not fit the criteria.

In his opinion, I have neither dry eye (failed the Schirmer's test) nor dry mouth (failed the saliva test), so the symptoms do not count. Grit in the eyes, cotton mouth, etc. are not counted. He said he could order the lip biopsy, but I said no to that.

He does think there is a problem, so he has ordered more blood tests, including blood sugar and others. They will also do an ultrasound to check for thyroid or lymph node issues.

For now I have to accept that it does not qualify as Sjogren's in his book. Either A) the symptoms will go away (not likely) or B) the symptoms will get worse and I will be knocking on his door every time there is a flare.

Kikil

P.S. You all know how frustrating all of this is; on top of all that, I get to do the whole thing--reading the criteria, discussing with the doctor and lab attendants, etc-- in Finnish (not my mother tongue). 'Dry mouth' is 'kuiva suu', and 'dry eyes' are 'kuivat silmät' in Finnish, so it is not the easiest to manage describing symptoms or understanding lab paperwork, even if I would not be so sick!