Author Topic: New blood test for Sjo  (Read 2457 times)

Pepe

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New blood test for Sjo
« on: January 18, 2014, 07:45:56 PM »
Hi all,

 I used to come here all the time about a year ago, but I keep getting shot down that I didn't have Sjo, so I moved on as much as I didn't want to. I wound up finding out that I have Myopathy they think some form of Muscular dystrophy, lots of testing. There have been so many impossible changes in my body in the past year, I have lost the use of my bladder and need to cath myself twice a day, I also have lost the use of my colon and need to have a colostomy, of which I'm putting off as long as I can. The GI Dr seem to feel it might be Neurogenic so I'm about to have a bunch of MRI's, brain all the way down the spine.

So back to the blood test, the eye Dr is amazing and she's on top of all this new stuff, this is the web site if anyone is interested..http://www.nicox.com/index.php/en/news-media/news/news-detail/nicox-launches-sj-in-the-us-and-partners-with-the-sjgrens-syndrome-foundation.

They say that 50% of the people that tested neg before might test positive now. Out of 5 people I was the only pos one. So the Dr is  taking this to my Rhume. I have spent the last year with such dry eye's and skin, my vagina actually bleeds and I have to use steroid suppository's to reduce to inflammation.

I am really interested in getting some of your takes on this new blood work. It's so interesting.

I am so happy to be back!! :)

   


SjoGirl

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Re: New blood test for Sjo
« Reply #1 on: January 18, 2014, 08:05:01 PM »
Interesting indeed! Heartening since my rheumatologist says I have SjS though it could be undifferentiated connective tissue disease.

My only questions why is this test available to eye docs. If it's really effective and the Foundation, which I am a member of, really wants more people diagnosed why isn't it available to all docs? Maybe it's just me but it ticks me off.
Raynauds, SjS, anemia, neutropenia, leukopenia, thrombocytopenia, osteopenia, degenerative disc disease, hiatal hernia, esophagitis, viral infection. Reclast, Restasis, Neulasta, Vitamin D, Feosol (if my iron levels really dip).

Pepe

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Re: New blood test for Sjo
« Reply #2 on: January 18, 2014, 08:42:05 PM »
That's just it they are trying to get it out there to all doc's, but it seems to them the eye doc's are the place to start because of the sever eye issues. Then they are following through with the rhume's and other doc's. That's what's going on with me right now, it's so new I guess they are going to hit bumps in the road. I hope this turns into a positive for all.

Carebear

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Re: New blood test for Sjo
« Reply #3 on: January 18, 2014, 09:52:20 PM »
Dear Pepe,

I am so sorry that you did not get the support you deserved from this discussion board when you were last here.  That makes me feel very upset for you.  So I am glad to see you have returned.

This new test sounds promising and I think will offer hope to many who are undiagnosed.

It sounds like you are experiencing a lot of health challenges.  Maybe you can make a new post here to tell us more about yourself.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Pepe

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Re: New blood test for Sjo
« Reply #4 on: January 19, 2014, 07:17:00 AM »
Oh I never meant to imply that the discussion boards weren't there for me, they were that's  why I came back.

quietdynamics

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Re: New blood test for Sjo
« Reply #5 on: January 19, 2014, 09:08:59 AM »
Thank you Pepe for sharing this great news.

Having a test to Dx early is so important to all of us and those who may follow and those who hopefully will not...

..as studies have show that the efficacy of plaquinel is best at its' earliest start in the disease.

The most debilitating Sjogrens symptoms I have are in the Neuro sector and are managed by continuing monitoring of a Neurologist.  Incidentally, some of the GI symptoms, which at times left me home-bound, were helped significantly by neuro meds.

I also have a Dx of Fibro. This link lists GI symptoms. I did not really respond to tender point exam. Myalsia was in quadrants along with still present to date muscle weakness.
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/rheumatology/fibromyalgia-syndrome/
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

SjoGirl

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Re: New blood test for Sjo
« Reply #6 on: January 19, 2014, 04:01:48 PM »
Thanks Pepe, this has been bothering because like so many here I've been through heck trying to be diagnosed. 
Raynauds, SjS, anemia, neutropenia, leukopenia, thrombocytopenia, osteopenia, degenerative disc disease, hiatal hernia, esophagitis, viral infection. Reclast, Restasis, Neulasta, Vitamin D, Feosol (if my iron levels really dip).

Pepe

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Re: New blood test for Sjo
« Reply #7 on: January 19, 2014, 06:17:33 PM »
I have to say SjoGirl I hope this is the new future for a lot of us, who have been very sick for a long time with no answers. Unfortunately I've had way to many scary answers lately.

 quietdynamics, they tried to tell me in the beginning when I first got sick that I had Fibro, I knew I didn't, I had none of the trigger points, they didn't know what to tell me so they just said that. Very frustrating for a lot of people. The site you posted is very informative, thank you.

I have to say all of my Dr's are at Hopkins, but I would never see the Sjogrens Dr's there again, they are very set in their ways and I don't think they will ever agree with any new changes, to me their like dinosaurs. But I love all my other Dr's, and they have been saying all along that I have Sjo, well now they are right!!

Thanks my friends

gemini052377

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Re: New blood test for Sjo
« Reply #8 on: April 07, 2014, 10:33:48 PM »
Thanks Pepe for the link. Hopefully this will be just what so many sufferers need for their dr s to pay attention!
Mary-Primary Sjogren' s, Hashimoto' s Auto Immune Thyroid, Fibromyalgia, Chronic Fatigue Syndrome, Reynauds, and busy mom of 4 kiddos :)

gold55

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Re: New blood test for Sjo
« Reply #9 on: April 07, 2014, 10:58:42 PM »
I'm assuming this is a blood test?  duhhh....that's what it says in the subject line! sorry.... It is weird that they wouldn't promote this in Internal Medicine offices moreso than Ophthalmology.
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

gemini052377

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Re: New blood test for Sjo
« Reply #10 on: April 07, 2014, 11:44:44 PM »
Gold 55, on one of the Sjogrens Facebook groups a member was requesting each of us to tell what a day in the life of a Sjogrens patient means to us. She is helping out together an information video for Dr/eye DR/dentists for a new blood test.  I remembered a member here had a link for a new blood test so had to find out tonight on here. I am going to contact her tomorrow to see if it is the same one. This would be so great, since I know many on here are seronegative and are either denied treatment based on that unless fortunate enough to have Dr willing to based on symptomology.
Mary-Primary Sjogren' s, Hashimoto' s Auto Immune Thyroid, Fibromyalgia, Chronic Fatigue Syndrome, Reynauds, and busy mom of 4 kiddos :)

machenza

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Re: New blood test for Sjo
« Reply #11 on: April 07, 2014, 11:53:55 PM »
Thanks Pepe,

And welcome back.
I, like some others in here have all the symptoms, and then some, but the doctors are still afraid to label me with the Sjo word. My eye doctor (off all people) said it is possibly a Secondary Sjo, and then never recorded that in my patient record? I hope this early test goes in use everywhere fast,

Nellie

Sjo 2014(pend), sicca 2014, IC 2010, GERD 2008 with Nissen 2010, Allergies: dust, shellfish, Quinine

litliwlowa

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Re: New blood test for Sjo
« Reply #12 on: April 08, 2014, 04:05:47 AM »
My rheumy ordered this test on me a week ago. Takes about a couple of weeks for results.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer

cccourt1942

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Re: New blood test for Sjo
« Reply #13 on: April 08, 2014, 08:18:41 AM »
After just a few months of even hearing the name Sjogren's, it is as if I have entered a separate universe.  The most intriguing element of Sjogren's is how elusive it is.  My diagnosis was easy.  The decades it took to know there was something awry with my body not so easy.  I can't imagine how frustrating it is for those of you who cannot receive meds for relief.  As to dismissive doctors?  Geez...so much for "do no harm."  It reminds me of when I realized if a doctor couldn't diagnose a FEMALE she was sent for psychiatric evaluation/treatment.  Yet when a diagnosis for a MALE couldn't be made, HE was sent to a cardiologist. 

This test is quite promising.  If I were undiagnosed, I would print this out, search for a "Sjogren's friendly" ophthalmologist and see where it took me.  I am glad Litli has been tested with it though I thought she was SjS positive already. 

Good luck Pepe..thx for this post.
Primary Sjogren's, GERD, Asthma, Cold hands and feet...but no red/purple, Sialadenitis, Stomach/digestion problems, sudden onset fatique, Psoriasis, Psoriatic arthritis (mild) Teeth discoloration, pilocarpine, Orasoothe, Xylimelt, Citrucel, Alcon- Tears Naturale, Nexium, Celebrex, Pilates Reformer

Velcro

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Re: New blood test for Sjo
« Reply #14 on: April 08, 2014, 08:52:04 AM »
Since it says they partnered with Immco to market to the ophthalmology world, I'm assuming this is the same blood test that we were talking about awhile back with the new markers for early detection?

I wonder why they chose to go with the ophthalmologists to promote it versus Rheumatology world?  I get they see the dry eyes and other problems of the eye that are caused by Sjogrens but you would think they would go with those that possibly have an in-house lab.  It will cost me more to go to an independent lab than use my Rheumy's in-house one. 
Raisin cookies that look like chocolate chip cookies are the main reason I have trust issues.

Linear Morphea Scleroderma '11, Sjogrens Antibody B Pos '11, poss Sarcoidosis '13, Anemia, Dry Eyes/Mouth/Skin, Dental Decay, Fatigue, Dry Cough, Joint Pain, GERD