SSB Positive, SSA Negative, DX'd Sjogrens. 1st symptoms were panic attacks and pains

[Jls34]

I have recently been diagnosed with Sjogrens, Rheumatologist wants me to get a lip biopsy but says because I have SSB antibodies he says he is pretty sure that it's Sjogrens. He put me on Plaquinel a week ago. I use to feel really healthy, regular bowel movements, good energy...

My symptoms started in mid-february with bowel problems, diarrhea, gas, grumbling stomach, felt like a virus. Two weeks later I experienced a panic attack while watching TV. Started getting chest pains, especially around the ribs, boobs and sternum. I felt like my heart was beating really strong. Later that night I had another panic attack that was even worse, caused me to tremble and my teeth were chattering, So I went to ER. They said I was having a stress reaction, gave me a shot of lorazapam and sent me home.

Panic attacks continued, sometimes an hour long. Bowel problems also continued and I started getting joint pains, sore throat, glands felt like they were pressurized.  I kept having muscle spasms especially while trying to sleep, sometimes they were much slower more like slow contractions and releases of muscles. I had trouble sleeping because it hurt so bad when I laid down. Usually the opposite side that I was laying on hurt. I experienced alot of back pain and sometimes I felt like the pain was in my spine.

I ended up going to the ER 4 times in the month of March. 1st time they said stress reaction, 2nd time they referred me to a gastroenterologist because I was still having diarrhea and they told me everything else was fine, 3rd time I went for the joint pain, I told the triage nurse that I might have lymes disease because I have been bitten by ticks and have had rashes. She asked me to tell her about my rashes, I mentioned a rash that I get on my arm in the summertime and it goes away by the time winter rolls around (this rash was here for the past two years during the summer months, but has not showed up yet this year). She ordered an ANA and a lyme titre. ER sent me home after I had bloodwork done and said unkown causes.. A few days later I requested my results from the medical records dept of the hospital. The lyme titre came back negative, the ANA was still pending. Meanwhile, I ended up the ER again for the 4th time! This time the doctor said he thought it could be GERD and gave me a RX for Pepcid, which I tried for a couple of days, of course it didn't help. I vowed to never go back to that hospital and thankfully my symptoms subsided. I feel much better now, no more panic attacks, just occasional slight knee pain, slight fatique and dry eyes/dry mouth, and occasional bowel probs still.

A few days after my 4th ER visit, I went back to the medical records dept. to pick up the results for the ANA. To my surprise it was positive 1:160 speckled pattern. I was really surprised that the ER doctor didn't mention it while I was in there. I wasn't insured at the time, so that might explain it.

Eventually I got insurance and visited my doctor who sent me to a rheumatologist.  Before I had a chance to see a Rheumy, I visited an eye doc who said I have dry eyes, which kind of surprised me. They sometimes feel itchy but I thought that might be from pollen. He put me on Restasis.

Finally, I went to the Rheumy, he did some tests and the only one that came back positive was for SSB antibodies. He said  that I should have a lip biopsy but that SSb is a marker for Sjogren's Syndrome, and that he is pretty sure that's what it is because my eye doctor had put me on Restasis for dry eyes and I do get a dry mouth.  I have been on Plaquinel for a week now.  My eyes and mouth feel like they have gotten much dryer in the past week. Sometimes my nose gets dry as well.

It's been about 5 months since my first symptoms, and I feel like the road kind of twisted on me. How did I go from panic attacks and pains to dry eyes and mouth? I read that Sjogren's can be secondary to other illnesses and that SSB without SSA is rare. I did request a hepatitis screening because I have a couple of tattoos that were done by non-professionals (almost 20 years ago, I am sure they sterilized the equipment but I guess you never really know). I am wondering if it could be Lymes still. or if I might have Lupus?   Or something else.

Not sure if this could be a sign of something as well, but I was bitten by a small tick a month ago. It bit me twice before I found it and I had someone pull it off of me, Now a month later it looks like several bumps around it and it itches. I had another Lyme test performed (unfortunatly, not through IgeneX).  Doctor told me to use hydrocortisone.

If anyone has gone through anything similar, I would appreciate your opinions. are there any tests I should request or anything else I should be looking for? Thanks for your help!

[robinAutoimmune]

I am also positive ANA 1:320 speckled pattern, and only SSB postive. sever fatigue, rashes, fever, stiffness, eye infections, dry mouth. On plaquenil now for two weeks and prednisone for 4 wks - prednisone made the difference for me and not sure on the latest drug as I am exhausted again and feel foggy with more digestive problems again in addition to the others. It is good to here I am not alone at this point. It took over a year to get any help or to know i am not crazy, so I am happy with the rheumatologist I am with now. good luck to everyone.

[Snottynose]

Sounds like me. Please get checked for alpha gal allergen.

[Olytown]

I was diagnosed in August and my SSB and ANA only were positive. Have had joint pain and thyroid problems for 15 yrs at least. I just started noticing my eyes and mouth getting drier and the other strange symptoms manifested gradually the last two years. Then boom! Summer came and my symptoms came on severely along with new ones. I've never had sun sensitivity or heat intolerance like this before! Thank goodness I found a great Rheumatologist in Seattle. Now I'm waiting to see a Neurologist. Putting the puzzle pieces together has been challenging.

[kreed23]

Hi I realize this thread is kind of old but recently got diagnosed with Sjogrens and am only SSB positive. Just trying to get more info on it all. Thanks!

[jmray69]

Hi LylaBlue: I am also only SSB positive. (twice, with second time higher than first). I had a lip biopsy last month- it was negative, arrrrghghgh! LOL
I have all the auto immune monsters: joint pain and stiffness, very dry mouth and eyes, extreme thirst, fatigue, hair falling out, skin rashes, migraines and headaches, high WBC count for last 4 months, peripheral neuropathy, swollen lymph nodes, abdominal pain and distention, blood in urine for last 5 months, sensitivity to light and sun, what else? Oh, yeah brain fog and cognitive issues! I wondering if you had any other labs that were positive or anything else? I'm having an appointment with Rheumy #2 tomorrow (today), because Rheumy #1 would not treat me based on symptoms and positive SSB. I just want SOMETHING to get me back to my old life and the old me, to not feel like absolute HELL every day!!

[trixieplayer]

Hello there! Hope you are having a good day. I was diagnosed with Sjogren's about a year and a half ago. Since that time I have been experiencing more and more of the symptoms as the disease progresses. I also have Sarcoid's, acute pancreatitis, gastroparesis and a hiatal hernia. I have constant bouts with joint pain. Seems to move from one area to another. A rash on my limbs that comes and goes and dryness in my mouth, eyes, nose, skin and other places that I won't mention. I am on Plaquenil but am experiencing side effects regarding my eyes. I don't know if sharing this information will be helpful or not, but I thought you might like to know that you are not alone out there! One more thing, I was told by my physician that the anxiety is caused by your body reacting to the expectation of a pending pain attack if you are due for your pain medication. At any rate, good luck, I wish you well. Trixie

[LylaBlue]

Bluechickeroo

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Gmail

[LylaBlue]

I am only SSB as well - symptoms and on plaquenil since dec. 2010.

It is very rare to not be SSB. Would love to talk to you about it, if you don't mind.

:) leave me a message here on medhelp or email me.  ***@****.

[Jls34]

and Best Wishes to you, I hope you have Good Health each and everyday!

[Jls34]

Thanks so much for your reply. (Wow! That's a boat load of Info, I don't even know where to begin!) It might take me a while to even start to understand what half of it means.  

I'm going to get busy googling and checking my bloodwork to see what I had tested, I'm pretty sure I had my thyroid checked. As for the rash that I had for the past two years (but not this year yet) it was definitely during the summer months, I remember because I would wear long sleeve shirts to avoid being asked "hey what's that rash on your arm from?" the question then became "why are you wearing long sleeves in this heat?"  The rash always went away in the late fall and winter months. I used to spend a lot of time at outdoor flea markets.

I am going to look into this matter some more, I will keep you posted with any new developements or diagnosis, until then I'll be singing anti-la la la!  Thanks again for your help and time, You gave me a lot to look into.

[Red_Star]

After all that lol, I forgot to mention that i have some of your symptoms when my thyroid flares up (hashitoxicosis) which causes hyper symptoms. I had a bad bout for 2 months but sometimes this only last a day or even a few hours.  I found a list of symptoms and you don't have to have every symptom.

From MyDoctor: "Thyroid gland disorders"

"Here are the types of complaints that characterise hyperthyroidism—an overactive thyroid gland.

Common:

Palpitations, fast pulse and irregular heartbeat.
Trembling and twitches.
Heat intolerance.
Hot flushes and increased sweating.
Increased appetite (or loss of appetite).
Weight loss (especially if eating well).
Diarrhoea.
Anxiety, nervousness and/or panic attacks.
Restlessness.
Irritability.
Thin, moist skin.
Soft, thinning hair.
Shortness of breath.
Muscle weakness.
Insomnia.
Enlarged thyroid gland.
Eye complaints (especially gritty or bulging eyes).
Fatigue, exhaustion and lack of energy.
Menstrual cycle disturbances (intermittent and light).
Infertility.
Depression and mood swings.

Less common:

Bowel disorders.
Brittle nails.
Chest pain.
Cramps.
Decreased libido.
Easy bruising.
Hair loss.
Headaches and migraines.
Sore throat.
Swelling of legs."

[Red_Star]

While i have never had Lyme's disease, i have read that flu like symptoms are early signs of the disease.  Anti la la la...sorry was singing away...lol! Okay, this is from fpnotebook:

"Anti-La Antibody

Aka: Anti-La Antibody, Anti-SS-B Antibody, Anti-La, Anti-SSB

Positive (percentage refers to sensitivity)
Sjogren's Syndrome (40%)
Associated with Sjogren's of secondary cause
Systemic Lupus Erythematosus (15%)
Associated with late onset Systemic Lupus
Associated with neonatal lupus syndrome
Rheumatoid Arthritis (5%)
Keratoconjunctivitis Sicca Syndrome
Systemic Sclerosis (1%)
Mixed Connective Tissue Disease (<5%)"

You may have lupus as well. Does this skin rash occur when you are in the sun? Sun sensitivity is one of the many symptoms of lupus.  

"It is probable that a person with lupus is serotonin deficient, perhaps because of a defect in protein conversion which can cause depression and panic attacks." Excerpt from Dayton-Wright website - "Systemic Lupus Erythematosus - A possible treatment". Hmm interesting.

If you have one autoimmune disease you have around a 25% of having another. Certain clusters occur together. I have three autoimmune diseases myself - Hashimoto's thyroiditis, juvenile pernicious anaemia, and vitiligo.

Excerpt from Multiple Autoimmune Syndrome - Three or More Co-existing Autoimmune Diseases by Elaine Moore...

"Types of Multiple Autoimmune Syndrome

Multiple autoimmune syndrome can be classified into three groups that correspond with the prevalence of their being associated with one another. In patients with two autoimmune diseases, this classification is helpful when signs of a third disorder emerge.

Type 1 MAS includes myasthenia gravis, thymoma (tumor of the thymus gland), polymyositis (inflammatory muscle disease), and giant cell myocarditis (inflammatory heart muscle disease).

Type 2 MAS includes Sjogren’s syndrome, rheumatoid arthritis, primary biliary cirrhosis, scleroderma, and autoimmune thyroid disease (Hashimoto’s thyroiditis, atrophic thyroiditis, Graves’ disease).

Type 3 MAS groups together autoimmune thyroid disease, myasthenia gravis and/or thymoma, Sjogren’s syndrome, pernicious anemia, idiopathic thrombocytopenic purpura (ITP), Addison’s disease, insulin dependent diabetes, vitiligo, autoimmune hemolytic anemia (AIHA), systemic lupus erythematosus (SLE), and dermatitis herpetiformis. For this group, the immune system marker HLA-B8 and/or DR3 or DR5 seems to be an important factor.

Other conditions found in various combinations in MAS are:

pemphigus and autoimmune thyroid disease in type 1 MAS;

chronic active hepatitis, SLE, pemphigus, bullous pemphigoid, AIHA, ITP, alopecia areata and Addison’s disease in type 2 MAS;

acquired primary hypogonadism, hypophysitis, rheumatoid arthritis, primary biliary cirrhosis, relapsing polychondritis, multiple sclerosis, chronic active hepatitis, ulcerative colitis, and scleroderma in type 3 MAS."