Possibly Sjogrens.

[Inquisitive75]

I underwent a minor salivary gland biopsy on Friday (it's Sunday) and it was ROUGH! After the numbing agent wore off it has been extremely sore and painful, so I have been stiff lipped and only able to drink and eat pudding, apple sauce and mashed potatoes his weekend. I hope this test has some information of value so that it was not vain.

What led up to the biopsy has been going on for many years...for the last 20 years after the birth of my first child. I have had bouts of extreme exhaustion that go on for days or weeks accompanied by joint pain, difficulty concentrating, severe migraines at times... these "flares" seem to go away then life seems pretty normal only to flare up again. During the "flares" I seem to get sick easily unusually catching respiratory infections but not always. Coincidentally, I have always had extremely dry lips often cracking and bleeding, requiring constant application of chapstick but never really felt I had a problem with dry mouth. So, I have been sent for follow up at 3 rheumatologists over the years for possible Lupus. The first at age 21 told me he thought I had fibromyalgia and osteo-arthritis and to follow up in 6 months.(Being young and non-compliant I continued to have the symptoms for many years but never followed up with him).Then around the age of 36 symptoms continued to progressively get worse and new ones happened- stroke like numbness and tingling on my right side...long story short I ended up back at another rheumatologist. I had a positive ANA with positive antibodies for SSB but later negative ANA titer ? All of the other blood work was normal. He felt I may have dysautonomia and should follow up with the cardiologist for a tilt table test.(which I have not done yet)



I started feeling better so didn't go back...

Now I am 40 have had a marked increase in my migraines and they have evolved to be called "complicated with aura"...since I have ended up in the ER twice in the last year with numbness and tingling that started on my right side but the progressed to both sides. I did not have a head ache but ER called it a migraine aura. My "brain fog" is the second most troubling symptom after the fatigue. I actually can tell that I am becoming less intelligent or able to concentrate- it is affecting my ability to make decisions, plan and overall success at work.My primary did labs and my ANA was positive with antibodies for SSB again so he sent me to a rheumatologist (I live in another state so new one). This Rheumatologist was very dismissive basically said he doesn't think I have lupus and was going to tell me to follow back up with my primary and neurologist. I asked him to test me for Sjogrens in light of the the SSB positive test- he never once even asked me if I had symptoms of it or mentioned it and frankly I don't think he cares or knows much about the disease. So he ordered a biopsy... and it was painful, so I guess I will feel like like a fool for even asking if it is negative and he will think I am some kind of neurotic hypochondriac. Part of the reason I don't follow up with these doctors is that they make me feel like nothing is wrong and I feel embarrassed when the labs are all normal and I am complaining of all these symptoms that aren't supported by anything.

However, I am diagnosed hypothyroid and low Vit. D.

Does anyone have any similar stories..or have been diagnosed with SS without dry mouth but SSA -/SSB+ and neuro symptoms?