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My Introduction

Started by Kadiddle, September 29, 2016, 08:07:16 AM

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Kadiddle

I'm hoping I can find some answers and resources here.
I am 58, an RN, and consider myself to be fairly healthy. A bit overweight, but not obese. I was given a diagnosis of Undifferentiated Spondyloarthropathy years ago with a positive HLA--B27 and symptoms. Fortunately, other then some low back issues off and on, I have had little joint pain and swelling for over 20 years.
About 7 years ago, I was diagnosed with dry eyes. Chronic dryness, grittiness, occasional watering and goopy--ness (is that even a word?) I had a positive Schirmer test and just followed up with my optometrist. I eventually got 4 punctal plugs and two of them remain. Nothing serious beyond annoying. I eventually developed some symptoms of dry mouth, with a sticky taste in my mouth, needing water at my bedside, occasional sores in the mouth, and increase in cavities even though I am religious about brushing and flossing.
About 5 years ago, I had one episode where I woke up with a very swollen parotid gland. Oddly, the next day I woke up with a swelling above my left eyebrow. The one above my brow was a bit tender and itched. The parotid gland was a bit sore and I developed some shooting pains up in my cheek which was probably due to pressure on the facial nerve. I had a CT scan which showed swelling of some lymph nodes I believe, in the parotid gland itself. I was put on steroids and antibiotics and the swelling went away, except for a residual swollen node by my left ear. A biopsy was performed on the swelling about my brow because the doc thought it might be shingles. It wasn't, but I don't recall what or if they even determined what it was.
On occasion, I get a very tender area below the right side of my tongue. It gets red and very painful to touch.
In June of this year, I developed a very goopy and painful left eye with a bit of photophobia. We were on vacation and the small town practitioner looked at my eye and said "I am sending you to an opthamologist today. It was 4 pm. I had to drive an hour away and he told me I had a severe case of blepharitis and the toxins from the bacteria had eroded ulcers in my cornea. He put me on antibiotic drops as well as cortisone drops. I went home and made an appt. with what I thought was an opthamologist (turned out to be an optometrist) and he took me off the antibiotic drops because my ulcers had worsened and he felt it was due to a reaction from the antibiotics. I continued the steroid drops. 3 visits later when I realized I was seeing an optometrist, I made an appt. with my own optometrist whom I LOVE! He increased the steroid drops and here I am 3 months later. The infection moved to my other eye in spite of using prescription "eyelid hygiene" products. They did eventually get better, or so I thought. About 2 days before my follow-up appt. and having used all the steroid drops up, my right eye starts getting a bit weepy and my vision changes again. At the follow-up appt. he said the old ulcers are scarring and I have new ones in my right eye. Needless to say, I am now depressed and upset and fear I am going to lose my vision. I am back on steroids and another prescription "eyelid hygience product" that is VERY expensive.
Now...I go to my PCP to let her know what is going on AND......I have had continued and increased problems with constipation for two years. I have tried fiber, omega 3's, flaxseed, colace, Miralax, and I am still constipated and miserable. I have a chronic gut ache and never feel like I empty my bowels. I had a colonoscopy which  thankfully showed not even a polyp! But I am miserable. I feel like my gut is in 1st gear and going nowhere! I have been put on Amitiza which costs another fortune and I told my PCP I won't buy it again if my insurance won't cover it.
My PCP has run all the blood tests that are NEVER positive. But.....she is contemplating sending me to a Rheumatologist. I have hesitated to go because I fear I will be told nothing is wrong. This comes from being told 20 years ago when I had swollen fingers and knees and fatigue, that I had fibromyalgia. All the symptoms of Fibromyalgia were negative and it doesn't cause swollen joints. I was furious. Then, when my daughter developed swollen joints and a rash another Rheumy told me SHE had Fibromyalgia. (We saw a Peds Rheumy is Seattle who finally diagnosed her with Juvenile SPondyloarthropathy. )
My optometrist ordered what he says is a brand new test for Sjogren's. He is the one who initially said he believed that is what I have.
My question is this: What do you think of all this, and....should I go see a Rheumatologist? If I do, are there specific treatments that will really help with the issues at hand, especially my eyes? And....do you think my gut symptoms are related?
I am filled with questions but this is so long already, I'll wait for some responses to ask more.
Primary Sjogren's, Undifferentiated Spondyloarthropathy dxed 1994, Dry eyes with corneal erosions and ulcers, dry mouth, chronic constipation,
Meds/Supps: Meloxicam, Restasis, Evoxac, Omega 3 with Flaxseed Oil,  Multi-vitamins, Magnesium Citrate, Vitamin D3, Probiotics