Author Topic: Serum negative so no Sjogrens?  (Read 2811 times)

moniquek40

  • Guest
Serum negative so no Sjogrens?
« on: February 13, 2011, 02:22:08 AM »
Hello,

I've dry eyes (Schirmers is okay, But is very low), dry mouth, nose, recurrent pericarditis, hashimoto's, positive antibodies TPO, intrinsic factor and parietal cell. I have strange spots on my legs, and they are thinking now off erythema nodosum or vascular urticaria. Soon I'll now, because they've done a biopsy of the spots (they are killing me right now these terrible spots  >:() Cannot walk from the pain. I've read that erythema nodosum can be caused by sjogrens, but I don't know for sure if thats the right diagnosis.

My internist have tested on many anti bodies in the blood, such as SBB/SBA, ANA, cryoglobuline and many more (but no C-complex). All negative (except the TPO, intrinsic factor and parietal cell). But the more 'systemic' antibodies all negative. So it cannot be Sjogrens because my blood is so 'beautiful clean' as he said it. He won't look further and a lip biopsy will not be performed.

Now I've read already that negative ANA, SSB, SSA etc doesn't mean no sjogrens. But is he right when he said that a systemic disease like sjogrens should be noticeable in the blood somewhere? I'm confused and first wanted a second opinion. But because of the very 'beautiful clean' blood I feel like a fool to insist on the second opinion. But I do have these other auto immune antibodies. Maybe there is a connection?

Can anybody help me out?

Thank you from a desperate Dutch girl... (that's why this funny English...)

Joe S.

  • Hero Member
  • *****
  • Posts: 6417
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD
    • Chakra Force
Re: Serum negative so no Sjogrens?
« Reply #1 on: February 13, 2011, 03:27:03 AM »
If I have not said welcome, then welcome to the forum. A lot of us are serum negative. I have noticed that the blood work may show positive years later. With my Doctor, I said "I have dry eyes, dry nose, dry mouth, dry skin, and dry bum. What do you think it is?" He came to the Sjogren's conclusion.

A number of us have posted what we take in our signatures. I have to use alternative methods. D3 seems to be common along with Omega 3 oil. As with any supplements contact your health care provider.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve
Reiki, reflexology, meditation, electro-herbalism

Meld256

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 2569
Re: Serum negative so no Sjogrens?
« Reply #2 on: February 13, 2011, 03:48:50 AM »
Hi moniquek40,

Welcome to Sjogren's world!   :) I hope you'll find lots of good information here and great people to help. By the way, your English is very good.

Someone may post a link giving this type of information, but I believe it is estimated that around 30% of Sjogren's patients have nothing in their blood to prove the diagnosis. I, as well as Joe S. and quite a few others were diagnosed from classic symptoms: I have extremely dry eyes with inflammation, very dry mouth and dental problems, have had a couple of partoid gland infections, joint and muscle pain, fatigue, etc.

I'm sorry you are having such pain in your legs. Hopefully the internist can get that problem under control. As for them not wanting to look into anything further considering Sjogren's or any other autoimmune issue, I'd find another doctor and get a second opinion. Just because you have "beautiful clean blood" doesn't mean there might not be something else going on.
Trust your instincts!  ;)

Melinda
57, female, Sjogren's dx 09/2010, Fibromyalgia and CFS dx 04/2009, meds: Savella, trazodone, Relafen, Plaquenil, Restasis, FreshKote eye drops, Bepreve drops, Optive Refresh, Biotene OTC products, retired/SS 12/2010

http://www.sjogrensworld.org/chats.htm
http://www.sjogrensworld.org/index.html

sarahjane

  • Full Member
  • ***
  • Posts: 148
Re: Serum negative so no Sjogrens?
« Reply #3 on: February 13, 2011, 04:43:15 AM »
Hi and welcome
I too have beautifully clean blood apart from a Vit. D deficiency and a 0 0 Schirmer's so am awaiting a lip biopsy in a couple of weeks to confirm my Dx. The advice from the others is always great and I find the forum very grounding. I agree a second opinion is in order though ultimately receiving treatment regardless of a Dx is the most important-has he discussed this with you? I know it's not the easiest thing swimming against the flow of 'esteemed professionals' but its worth looking further. I almost gave up and without the support and encouragement of others I would've walked away at my first lot of sero negative bloods and not pushed for a rheumy. Now I'm getting what I need
All the best
Sarah
sjogren's syndrome, fibromyalgia, hashimoto's, erythema nodosum, saphenous nerve neuropathy,TMJ, Loinpain Haematuria Syndrome,Vit. D deficient
Hydroxychloroquine,Pregabalin,Amitriptyline, Vit. D,paracetamol,tramadol,levothyroxine

dainbramage

  • Sr. Member
  • ****
  • Posts: 412
Re: Serum negative so no Sjogrens?
« Reply #4 on: February 13, 2011, 05:44:39 AM »
I had to have a lip biopsy for a diagnosis.....and I was positive
44 with SJS, IBSc, migraines, brain fog and fibro. Dry skin, burning tongue, dry mouth, swollen glands, dry female area, numb toes, tingling fingers. On plaquenil, pilocarpine, cymbalta, zyrtec, provigil, vit D, mag, Amitiza for IBS, treximet for migraines.
I Live For Chocolate

Scottietottie

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 8712
Re: Serum negative so no Sjogrens?
« Reply #5 on: February 13, 2011, 09:01:26 AM »
Hi Monique  :)

Welcome to Sjogren's world.

It is definitely possible to have Sjogren's without having positive bloodwork. When Sjogren gave his name to the syndrome - there were no blood tests. He must have gone by symptoms!
It is also possible to have Sjogren's overlap with other autoimmune conditions and according to my rheumatologist this can lessen the chances of systemic assault.

I'm no medic but are the TPO antibodies the ones that are thyroid related? Thyroid disease can make one feel very ill and many symptoms overlap with Sjogren's.

Your English is excellent. If you ever feel like 'chatting in real time' Sjogren's world has a hosted chat on a Wednesday evening at 7p.m. GMT.

I hope you find the site useful.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)


Never do tomorrow what you can put off till the day after tomorrow!

Carolina

  • Hero Member
  • *****
  • Posts: 3733
  • —if it ain't one thing, it's another." Roseanne R.
Re: Serum negative so no Sjogrens?
« Reply #6 on: February 13, 2011, 09:56:12 AM »
Dearest Monique:

Welcome!

I try to say Serum normal, it sounds less, um, negative.

I have had dry eye dry mouth for about 9 years now. 

It is worst at night, and I spray my eyes and sip water several times a night, and run a humidifier 24/7 all winter.

I also take Evoxac and use Systane.   and Keeping my nose clear is also important cause if I breathe through my mouth all night it is a horror show.

All that said, when I read about the dryness and misery so many people here have, I am humbled and grateful for my minor problems.

I did have to give up contact lenses too, which broke my heart.

However, all THAT said, the treatments for most of our problems are for the symptoms, unless you're taking Plaquenil, prednisone or one of the chemotherapies like methotrexate.

And you already HAVE some heavy duty diagnoses.   AND yes on AI conditions often cascade, one leading to another and so on.

I have been diagnosed with IC (Interstitial Cystitis, inflammation of the lining of the bladder) which doesn't have a blood test, but instead is visually observed with a bladder cystoscopy!    50% or more of the people with Sjogren's develop IC, and vice versa.

You KNOW what you are suffering.  Get treatment for the symptoms.  A lip biopsy often reveals Sjogren's when the blood work is normal, I believe.

Keep us posted.

Kisses

Elaine
Female-72-CVID-pSJS-IC-Periph.Neuropathy-CAD-Osteoarthritis-POTS-Auto.Neuro-Anemia-Copper Def-Raynaud's-Blepharitis,Meniere's/Deafness-Hiatal Hernia-IVIG-Gamunex-Medrol-Neurontin,Atenolol-Pilocarpine-Copper-Cymbalta-Nasonex-Lipitor-Estrogel-B-12-Iron-Alpha Lipoic-D-Mannose-NAC-Co-Q10-Turmeric,more..

Patze

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 6709
Re: Serum negative so no Sjogrens?
« Reply #7 on: February 13, 2011, 11:38:00 AM »
Hi Monique!

Let me also welcome you to the SJS World and family! :)  Please do look around as there are scads of topics with lots of great information to be found by using the search engine in the upper left hand side of the page.

I understand about having "clean blood" as I often joke, I'm the "sero negative queen" around here as I've never had a positive for anything including Hashimoto's (have a positive from a fine needle biopsy). :D

Your doctor makes a good point as it should be detectable in the blood work, but not everyone's immune system works the same (like I know that a lot of folks here had the usual childhood diseases like mumps, chicken pox, measles and such, but I never did (have siblings who had all of these, but I never developed any of them other than the typical colds and flu's)).

No, you're not crazy to think about getting a second opinion.  I was lucky enough that I got a rheumy that treated my symptoms even though my blood is also "clean", and the diagnosis was only SICCA (with other doctors I was not so lucky :-\).

Again, welcome and I hope that you find the board comforting as I do.

Take care of yourself -

Patze
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

seren

  • Guest
Re: Serum negative so no Sjogrens?
« Reply #8 on: February 13, 2011, 12:47:10 PM »
Hello Monique...

I understand your confusion and unease..  All my blood markers for Sjogren's (SjS) were negative except my Anti-Nuclear-Factor (ANA) which was positive and although this test is not specific to SjS, a positive result shows some autoimmune process going on in the body.  I too believe that TPO antibodies are relevant to Hashimoto's Thyroiditis.  I don't understand why some Rhuematologists don't acknowledge the fact (as its well documented) that a good proportion of people are sero-negative for SjS.  There seems to be no continuity in this profession ???, its so annoying GRR!

My rheumatologist would not diagnose me and then my dentist ordered a lip biopsy, this was positive, so I finally got my diagnosis...in my opinion, we all need a diagnosis if possible in order to move forward!

I hope you get something more definite from your rheumatologist and I really hope your pain eases with those spots on your leg..

Keep us posted..

Take Care
Paula  ;D

gphx

  • Hero Member
  • *****
  • Posts: 521
Re: Serum negative so no Sjogrens?
« Reply #9 on: February 13, 2011, 02:23:59 PM »
Smoking, Prednisone, various other medications, herbs, and even foods can be immunosuppressive and lead to false negatives even though positive bloodwork is not a requirement of Sjogren Syndrome.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

moniquek40

  • Guest
Re: Serum negative so no Sjogrens?
« Reply #10 on: May 01, 2011, 10:37:05 AM »
Hi again,
Finally i've had my appointment with the reumatologist. in the meantime i had two skinbiopsies, The first revealed a kind of eosinophilic vasculitis, which fits churg Strauss, but I  had other signs of this disease. The second revealed urticarial vascultitis, and this looks more like lupus but can be caused by many things. My reumi said that it really looks like i have ? systemic disease, but they cannot proof which one.
Within two weeks i'll have a lipbiopsy and they will take a closer look at my nose ( dry nose).
Bytheway, I also had a reactivation of epstein barr virus. Coupe this have any connection to sjogrens'? I did see on THE internist that lupus and ebv often are related. Lupus is still an option, but with negative ana, it is less likely.
I'll keep you posted.
Monique

Dry1000

  • Jr. Member
  • **
  • Posts: 70
Re: Serum negative so no Sjogrens?
« Reply #11 on: May 01, 2011, 12:45:10 PM »
Hi moniquek40

                        I have no definitive diagnosis, except for some hormone issues and I couldn't make tears or saliva and was always tired. I asked my Dr if I could try plaquinel and see what happens, he went along with it and about 6 months later I started feeling sooo much better. Look into the plaquinel.Good Luck.

irish

  • Hero Member
  • *****
  • Posts: 10419
Re: Serum negative so no Sjogrens?
« Reply #12 on: May 01, 2011, 03:01:08 PM »
Monique, I haven't taken time to thoroughly read this whole thread, but I do want to tell you that your doctor must be a little delusional or something because there are so many people who have sjogrens and other autoimmune diseases without the positive blood work.

In fact, the blood can go back and forth from negative to positive and depending on when the blood draw catches the positive is when some of the docs are truly believers. Unfortunately, they have missed the boat. My immunologist and many other docs believe that you treat the syymptoms not the blood work and I really appreciate that. My positive blood work for sjogrens showed up after the positive lip biopsy. Then a few years later the blood work converted to negative again but I still have the sjogrens.

If you can get treated by this doc for your symptoms that is good. If he is sending you on your way or ignoring you I would replace him. Good luck.Irish ;D

shopper

  • Guest
Re: Serum negative so no Sjogrens?
« Reply #13 on: May 01, 2011, 05:04:07 PM »
It is nice to hear I could have this with no positive numbers.
I need to ask my Dr. more questions. Currently mouth is a mess and burning.
My Drs. numbers do not even match the lab numbers on line
for a positive and no Ana was done this time Just the anti bodies.

irish

  • Hero Member
  • *****
  • Posts: 10419
Re: Serum negative so no Sjogrens?
« Reply #14 on: May 01, 2011, 11:53:56 PM »
Monique, I am wondering if you are seeing a cardiologist since you are having the pericarditis. Most of your symptoms are related to autoimmune. Seems that your doc doesn't understand that sjogrens travels along with many autoimmune diseases. It loves to hang around with Hashimotos. Irish ;D