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Sjogren's without sicca? Is it possible?


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#1 Eos

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Posted 12 June 2009 - 04:40 PM

Hi,

I went to see a sclero specialist at UPMC (very well published, very good reputation), and given my symptoms he thinks I may have Sjogren's because I have what he calls neuropathy of the second (?) cranial nerve, fatigue and joint pain etc. BUT the thing is I don't have dry eye or dry mouth (just small mouth :lol: ). Has anyone else here been diagnosed with Sjogren's despite not having sicca symptoms? My ANA is homogeneous, which also would mean Sjogen's, right? Sclero is not homogeneous, right? Can one be homogeneous and actually have sclero?

I have to get the Schirmer's test done and a whole list of other tests to confirm...yeah, here we go again.

I went there with the hope he would tell me I just would have something more 'manageable' (or lets say a less panic inducing disease or NO disease at all)... and instead he tells me I have most likely early stage diffuse scleroderma despite me not having skin symptoms (pending an old-fashioned SCL-70 test that he ordered because he thinks the automated ones produce a lot of false positives). And Sjogren's maybe too. EEEEEEEEEEEEEEK! He was supposed to tell me I was fine and just fatigued, suck it up, and go on with your life. :( Bummed! I can barely handle one diagnosis, what am I going to do with possibly two?!

#2 janey

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Posted 13 June 2009 - 07:25 AM

Eos,

I'm so sorry that you didn't hear what you wanted to hear - fine but fatigued. We all would love to hear that!

Personally I've never heard of Sjogren's without sicca, but I'm certainly no doctor and, because I don't have Sjogren's, I've never done any extensively research. We do have a relatively large section on it however, so please check out our Sjogren's Syndrome pages. You might find something there.

Since this doctor is a scleroderma specialist (not that they are perfect), I would hang in there and let him run all his tests and see what he comes up with. It sounds like he is trying to find out the cause(s) of your problems, so that's good thing. I know how frustrating it can be with all the testing, but be assured that once you have a diagnosis and all the necessary baselines have been established, the testing does decrease to some extent.

As far as dealing with two diseases, honestly, and speaking from personal experience - it's just like having one big one. I have polymyositis and scleroderma and since there is so much overlap in the symptoms, I just treat it like my one disease. Just requires more research time, but the emotional aspects and coping is the same.

So hang in there Darlin'. At least your doctor is trying and you are on your way to getting some type of diagnosis. Please keep us informed of all your test results and visits.

Big Hugs to you,
Janey Willis
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#3 mando621

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Posted 13 June 2009 - 09:30 AM

Hi Eos,

Interesting about the Sjogren's diagnosis without dryness, although you could have dryness and not really notice it. I've pretty much got all the symptoms of Sjogren's but the SSA and SSB antibodies are normal, and these are the typical antibodies indicative of Sjogren's. I've been told to get the lip biopsy, but so far I've decided that I would rather not go through that if the doctor isn't going to do anything beyond eye drops and such.

My dry eyes have been coming on for about 11 years. It started out that the optomitrist said I should be using drops, but I didn't feel like I had dry eyes. Now, they are definitely dry. I haven't had a re-test of the schirmrer test, but if they did it would probably stick even worse to my eye. I don't have a desert dry mouth, but it would be difficult to be in a spitting contest! I'm dry in other places too but not hugely noticable to me most of the time.

The Sjogren's diagnosis alone shouldn't be a huge worry to you. Most of the doctors I've seen say it is a disorder that causes "inconvenience symptoms" and tell me that it is no big deal. I know there can be serious side effects from Sjogren's by reading info even on this site, but my doctor's don't seem to think it is an issue. There was a "House" episode lately that had a woman diagnosed with Sjogren's based on the fact that she didn't cry even over a cut onion. She was told that she would be "fine", that it could be managed with eye drops. I really was annoyed with that show because even though I have the classic dry eyes, I even will get a tear response from a very strong onion (not very often, but it does happen). I still cry tears when I'm upset or sad, just not as many as in the past.

Mostly, I'm frustrated with not being able to read much anymore. My eyes are getting weird when I read for a while. Sometimes they water a little, most times they ache, and I have trouble deciding which pair of reading glasses is the best of the 3 I've got. I can't stand the feeling most over the counter eye drops leave me with, especially those with cellulose in them because I get a residue on my eye lashes that flakes off into my eyes.

I understand your feelings about the Sjogren's, I might also have limited systemic sclero. Sjogren's symptoms were what I started with and I'd have been fine stopping there. Unfortunately, I began getting other symptoms that point to some form of sclero. At least I've had baselines of most major tests and those are good so far.

I hope the best for you.

Mando.

#4 Peggy

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Posted 13 June 2009 - 10:43 AM

I'm sorry you are having to deal with multiple diagnosis. Just to let you know you're not alone, I now have 6 different autoimmune disease. I too have Sjogren's, but I also have Diffuse Scleroderma, Raynaud's, Polymyositis, Peripheral Neuropathy, and Hypothyroid. Like it was said earlier they all seem to mesh together and it becomes hard to tell which disease is causing what. I have terrible, terrible muscle pain and I don't know if it's from the scleroderma or the polymyositis. Frankly, I just want relief and I finally may be getting that with the addition of Methotrexate that I was put on. I also take Cellcept which has helped with softening my skin.

You are in wonderful hands if your doctor is that good in this field of medicine. With Scleroderma you need to deal with health professionals that know this disease being it is so rare. If you deal with doctors who don't know anything about these diseases you will just be wasting your time and could very well be jeopardizing yourself. The sooner you get a positive diagnosis the sooner you are on your way to deal with the disease. I have just developed and found out through a stress test that I have myocardial ischemia. I'm told by my cardiologist that I am one of the lucky ones that I had warning signs as people usually just have a full blown heart attack. I am pretty sure that this has been brought on by the Sclero going after my heart but thank heavens I deal with a doctor who knows the disease and what to watch out for.

I hope you get good news that it isn't these diseases. But if it is you are in great hands and you have come to the right place for support, information, and comfort. Everyone here is wonderful and so very helpful.

Warm hugs,
Peggy

#5 nan

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Posted 13 June 2009 - 03:46 PM

Very interesting! I have Sjogren's and the dry eyes and mouth are horrible. Don't let it scare you, it's manageable. I am sorry you are having to deal with so much.

Take care,

Nan

#6 betty32506

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Posted 13 June 2009 - 06:57 PM

My eyes have long been sort of dry. Recently I asked my ophthalmologist about it and he said to a lesser degree. The reason I asked him was that my rheumatologist without any special test. told me I have Sjogren's. I have had times with dry mouth but think that is related to medications. I got sores under my lips and then I became so sensitive that anything except the blandest burns my mouth. Toothpaste was impossible. I finally found a kids one that wasn't too bad. My main complaint was the sores and burning. The sores were also in my nose and into the sinuses. The dentist was no help. When I told the rheumatologist she said right off that it was Sjogren's. Never did a lip biopsy or any such. She prescribed Evoxac. It is to help with moisture. Now that the weather is getting warm I really sweat. It has worked very slowly but the sores in my mouth are about gone and I am again using regular toothpaste. The only conclusion about the diagnosis is that it, or something, took care of the problem with only a small residual problem.

I have not read any other posts where diagnosing was that simple. She has done lots of labs and I don't know how that fits.

Betty

#7 Jeannie McClelland

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Posted 14 June 2009 - 04:25 AM

Hi Eos,

I wouldn't get too worried either about having Sjögren's. That's another one where progression is very variable and individual. Mine is certainly manageable. The biggest problem can be just spelling it! Well, the dry skin has made the inside of my black jeans (formal wear out here in the Rockies) pretty, um, interesting. :lol:

I wish I could remember the old thing about worrying. It went something like: has it happened? No, then don't worry. If it has happened can you do something about it? Yes? No cause for worry then. No? Then worrying won't help. Don't worry, be happy.

Warm, but slightly flaky, hugs,
Jeannie McClelland
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#8 Shelley Ensz

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Posted 15 June 2009 - 06:28 AM

Hi Eos,

Well, if it's any comfort at all, at your next visit he is quite likely to say that all your labs are normal now, no diagnosis, and maybe come back in six months or a year or if symptoms change. :angry: Most of us on the way to diagnosis went through a revolving door of our symptoms taken seriously, then dismissed or ignored, then more symptoms or unusual test results, and so on and so forth, often over many years.

A fair share of scleroderma patients also have Sjogren's; and in that event it is rather considered to be a symptom of scleroderma. Usually Sjogren's is a bit milder when it is secondary to another disease.

In fact, I've heard (although I'm not a doctor and have no medical training at all) that the more autoimmune diseases a person has, the milder the overall course is and the better the prognosis. Having multiple autoimmune syndrome (MAS) myself, which includes both diffuse scleroderma and Sjogren's, I'd really tend to agree with that. I also agree with Janey's conclusion that it is just like having one big disease. I mean, if you're sick, you're sick. No matter how they label it, you're still sick unless they label it with something that has a fabulous, instant cure.

So, if you're sick, you're sick. Doesn't matter what label they put on it, one or two or even more. And, the more labels they do put on it, the more likely you are to have a bit milder or slower progression in the overall course of disease, if you go along with the general concept that more is actually better, sometimes, and in a very strange way, in the area of autoimmune diseases.

Plus, frankly, I think they are a bit wrong to make so many distinctions between various autoimmune diseases. Doctors need to do it in order to try to make sense of things. But if you consider how many of us have various or multiple overlaps or almost entirely different symptom sets or severity, you'll see that the diagnoses are sometimes a bit arbitrary, at best.

If you're sick, you're sick. Either a diagnosis or a lack of one isn't going to change that a whit. And going by Jeannie's wonderful line about worry (I love it!), none of us have anything to worry about, anyway. :rolleyes:

Let us know how it all turns out, okay? And good luck coping with things, in the meantime. We are always here for you!
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Shelley Ensz

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Posted 17 June 2009 - 06:52 AM

Eos, have you heard anything yet?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.