Thursday, February 15, 2007


Ok, I saw the surgeon this afternoon. The lump on my neck is just a cyst, albeit an unusual one and different than any I've had before. But removing it is completely optional.

Since i don't do well with stitches and adhesives and the like, I opted just to leave it alone. I was warned that this lump may never go away, but that really doesn't bother me just so long as there's nothing unhealthy about it. I gave up being concerned about superficial things like looks a long time ago because it consumed energy I couldn't afford to spare.

The thing I am concerned about, though, is the letter I received in the mail yesterday from the rheumatologist I saw last month. He decided since my bloodwork was normal (it always is except the c-reactive protein, which fluctuates) and since no one was forthcoming with a copy of my lip biopsy report that it is doubtful I have Sjogren's! He states that while I can stay on the Restasis and pilocarpine, the other meds aren't necessary, and I don't need to see him again for a year.

Has the man never heard of sero-negative Sjogren's? I know for a fact that my biopsy report stated that the congregations of lymphocytes in the salivary glands examined numbered greater than fifty, which is absolutely diagnostic of Sjogren's. Even my primary rheumatologist in Denver, who was most skeptical about me having Sjogren's, completely changed his mind after my ENT did the lip biopsy.

I absolutely cannot continue seeing this doc. He would never support a disability claim because he doesn't think I am all that sick. And if I cannot stay on my meds or continue routine monitoring of my condition, Social Security could come to the conclusion that I have improved enough to go back to work, which is not the case.

I was concerned with the fact that my old primary rheumatologist had not sent the requested records. The letter made it sound like new guy thought I was withholding information intentionally. So I called Denver and found out the records department was in the process of a move and had every intention of tracking down the requested paperwork as soon as they were transferred to the new place; no conspiracy there.

The letter also contained mixed news about my new x-rays. Apparently, I have spurs in my mid-back, arthritis in the hips and disc degeneration at L5-S-1 that I didn't even know about. Despite this, the doc concludes that the cause is not Sjogren's but osteoarthritis and that my "discomfort" is primarily from fibromyalgia since he didn't find anything "severe".

So even when this guy actually finds something wrong, he still dismisses it! Well, gee, what a relief to find out all my previous docs were wrong! I think I'll just jump up and go run a marathon since I "only" have fibromyalgia!

What a tard! I would just laugh him off, except that he's a board certified rheumatologist with the power to convince the world I am not disabled after all. I have to find someone reputable that agrees with my previous docs ASAP.

Hence, I have made an appointment with a rheumatologist in a different office in two weeks. I will make sure she gets a copy of the elusive lip biopsy report if it's the last thing I do. Unlike the moron I saw last month who probably hasn't read a medical review since the day he got his degree, this rheumatologist studied recently at the Mayo clinic and probably has more up-to-date knowledge about Sjogren's and fibromyalgia.

I'm probably over-reacting, but that letter felt like a massive slap in the face. I can tolerate just about anything except being labeled a liar when I am trying my very best to be helpful and honest. I am extremely sensitive and defensive about not being believed by docs since I had to tolerate disrepectful treatment a multitude of times during the ten years I've been sick.

The very last thing I wanted when I moved was to have to start from the bottom to become a credible patient again. Why aren't seven years of medical records from highly informed and skilled medical professionals enough? Why do I have to do the ridiculous song and dance of "see, I really am sick" all over again?

More importantly, if "all" I have is fibromyalgia, why would eight doctors in Denver think otherwise? I guess I should be grateful Dr. Doubtful didn't accuse me of faking fibromyalgia too. If he had, he'd be a perfect candidate to perform those bogus exams for long-term disability insurance companies.

I'll stop here because my fake arthritis is causing fake stiffness in my hands.

I'm a total stranger to you, but I get alerts whenever "sjogren's" shows up in new whatevers on the web... I'm a Sjogren's patient, was in med school before it... I'm sero-negative, but there's not a doubt in anyone's mind that I need things like evoxac and, because mine is severe (disabling in my case, as mine is causing strokes and other severe bleeding problems)... prednisone, plaquenil, a lot. Anyway, the growths are common to Sjogren's to a degree, but you might want to look up and throw out the term "sapho" syndrome to see if it rings any bells. I've only read this entry... but particularly if you are of fairly pure Irish descent, you might carry the genes that make you more likely to have it. It's an acronym for synovitis, acne, pustules, hyperostosis, and osteitis. Not sure if you have skin issues, but there tends to be acne on the face and upper back in a triangle and the pustules tend to be on the hands and feet--most only have one or the other of those two, but you'd have to have one or the other for it to be a consideration. The hyperostosis, though, I've had cysts and bone spurs, etc. from for years...

Honestly, I'd have the cyst removed. I say that knowing people who have had infection after infection from growths through the neck, very specifically people with Sjogren's. An infection there is 1) very very bad and 2) very very hard to treat effectively. They won't tell you it's an increased risk, but autoimmune people have increased risk, and your WBC will be so intent on killing the good cells that the bad ones don't oftentimes have enough to handle the real issues.
Wow, I had no idea. I will look into it. Thanks for the info.

Wanted also to say that I'm sorry you have severe Sjogren's. Strokes have got to be scary and frustrating. I'm glad that no one is doubting you.

I have what I would describe as moderate Sjogren's, which I define as extra-glandular activity but no life-threatening organ damage. My digestive system is a mess, I have neurological problems, and the fatigue is quite extreme. I also have mild vacsulitis and lung problems.

I was shocked at the lack of awareness about Sjogren's in South Dakota when I moved here a few months ago. No one outside the medical profession seems to have heard of it, and now I discover that even the doctors are misinformed or at least not current on their knowledge. Sad considering more people have Sjogren's than lupus or MS, and most people have heard of those.
No one doubts me now, but initially, yeah, I had a quacky doctor that said I had fibro (though my joints were what hurt most) and it was because I was a perfectionist, even though I'm a total slob (I have things I'm perfectionistic about, but not a lot of em). I am in my third year of waiting on disability. Epilepsy and lots of sustained injuries from falling off a 40 foot cliff (I got grabbed by the shoulder, freak accident), degenerative joint disease, etc on top of debilitating autoimmune stuff... all denied because I'm young (was 25 at the time of applying) and educated, therefore able to work? I couldn't work a 14 hour week steadily, sure can't do full time, but yeah... finding advocates is CRITICAL to say the least. That and a lawyer. Lots of people who can work get disability, meaning lots of people who can't get denied for an eon and do like me, living with generous friends and surviving on a few hundred dollars a month.

One thing I've learned about my sjogren's flare ups is the best way to tackle it is to go to a walk in urgent care type clinic and get a couple liters of IV saline shoved in me in a hurry. If I'm nauseous, which I usually am (digestive track really screwed by the lack of moisture, so sometimes I just can't process food let alone absorb its nutrients well)... zofran is the goddess of all nausea meds b/c it works on serotonin, not just sedating like most. That stuff is, if you have insurance of any kind, so worth it. It's horribly expensive, but seriously, in my really bad days, I'd pay the $30 retail price per pill. I've paid more to see a doctor and have less benefit, after all.

I and many other sjogren's people are in an LJ community just called "autoimmune." I'd recommend joining if you have livejournal or want to rant to anyone at anytime. Lots of people with lots of good advice on there. The collective "we" has been through the ringer with meds, bad and good docs alike... we know it better than most doctors.

Sjogren's is often listed as a type of lupus, though without the ANA factor present, it's classified as a type of arthritis by many rheumy groups. Mine would be the arthritis type, though my symptoms are systemic. The vasculitis is unfortunately a common coworker with sjogren's... I have it, too, and yeah, it will make you at a higher risk of strokes or TIAs (aka ministrokes, transient ischemic attacks). I've been planning on moving for a long while now to a place with good public transit since driving is not something I can afford to do, but my doctors... I've had to deal with just as many sucky ones (some at major universities like Duke!) as good ones... the ones I have now are SO fantastic that leaving scares me. The neuro team, before coming back to discuss treatment with me, had already called my rheumatologist to get it okayed. They are actually doing their jobs. Go figure, some places still have that kind of functioning environment. I worry about going anywhere else--I was in Missouri before and it was a nightmare compared to here as far as medical awareness and support.

sorry to ramble so much... your entry just hit home.
I definitely know what you mean about being relucant to leave good docs. If I could have afforded to stay in Denver, I definitely would have. One of my rheumys was well-known for his research and his contributions to "The Sjogren's Syndrome Handbook" and medical journals. I also had an awesome ENT who was the only one who believed me when I suspected Sjogren's initially. And my primary care doc never doubted my pain or fatigue levels and did everything she could to help.

I was approved for SSDI only after engaging the services of a well-known lawyer and asking for an on the record decision (approval without a hearing based upon what's already on file). I had also been denied for being too young (41) and too educated. I hate how the disabled are being treated like criminals for trying to access benefits to which they are fully entitled.

I do have a LiveJournal membership and may look into your group when I'm a bit less brain-fogged.
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