Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: ynevar on November 01, 2010, 03:28:55 PM

Title: Not sure I belong here? Biopsy and Depression...
Post by: ynevar on November 01, 2010, 03:28:55 PM
I guess I go back into the Undiagnosed/Undifferentiated category....

My salivary gland biopsy showed minor inflammation but was not conclusive for Sjogren's. 

Doctor has stated I am in the Undifferentiated Connective Tissue Disease category, that for now, is my diagnosis.  Unless something comes up later that indicates I have some other auto-immune disorder or Sjogren's that's what I am...

Funny--I don't want a diagnosis but at the same time I do.  I want to know what is wrong.  I want answers, I want to know this treatment is the right treatment for me.  I want to have something definitive I can say look, this is what's wrong.

I have the positive markers for early Sjogren's.  Dry eyes for the past 2.5 years.  Extremely dry sinuses and repeat sinus infections that don't respond to antibiotics well.  Severe pain in my body, stiffness mostly in the morning, fatigue, generally feel ill... I run low grade fevers often, sweat like no tomorrow when overheated and freeze when I normally don't. 

I used to be able to stand on my cement porch in socks in the middle of winter for several minutes and have it not bother me one bit.  Now--I bundle up like no tomorrow and the cold leather seat of my truck causes bad pain in my hips. 

I don't belong here, and feel like I am all alone.  I know my husband is here for me, my family to the extent that they can be.  I just feel really frustrated.  I have to go back to the Rheumatologist in Seattle in 5-7 weeks. 

Like we can afford that with me not working!!???  If I go down again I am going to say, hack pieces off me, take lots of blood, cultures, samples galore---biopsy, test, experiment if you have to.  Just figure it out so I can get things back in order in my life. 

Very depressed... Not sure that it will happen.  How long has Plaquenil taken for you all?  I need a ration of hope.... I haven't had the Shrimer test done or the Rose whatever---not sure it matters if my salivary glands were negative... at least for this doctor.  Maybe I should go to the Sicca place in CA.  I don't know.  Sad--Scared--Lost


Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: navydad on November 01, 2010, 03:46:59 PM
When I was at Mayo,, they did a salivary gland test,, they injected some kind of stuff in me and watched a monitor to see how much (uptake my salivary glands had,, it was minimal, my eye test was dry as a bone,, my SFN was confirmed,, but here again is the rub,, NO MARKERS, thats where you are,, no markers,, cant see it on paper so it doesnt exist
  Yes you belong,, and i feel the same exact way you do,, sad, alone and scared,,, sad for what the future is,, I am sorry you even have to think about ging back to seattle,,, I know my trip to Mayo was a waste of time and money,,, regardless of what they say,, my rheummy says,, you have SS,, regardless of what Mayo says,, they say this (disease) wont kill you,, but i;m here to tell you that it might not kill you like a massive heart attack,, but it slowly kills you,, it drains the life ut of you
 In the winter I was like you,, run around with just a shirt on,, now I watch the weather and cringe,,,, in a word,, it SUCKS
Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: Catilee2 on November 01, 2010, 03:56:23 PM
Dear ynevar,
    How frustrating! Just because a test doesn't show something, it doesn't mean that eventually it won't. If you are happy communicating here with everyone, don't let a formal diagnosis stand in your way.  In 1991 they tested me for AI diseases. The only thing that showed anything was a moderately elevated sed rate. That now tests almost normal because of the meds. In 2000 when they tested me so many things were positive, even though I still made a little saliva and was right below the normal range for tears.  My SSa and SSb still have very high values.  You have encouraged other while here, please realize that.  Good luck with the Rheumie appt.

Catilee 2
Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: Scottietottie on November 01, 2010, 04:27:44 PM
Hi Ynevar  :)

I'm sorry you didn't get the answers you were looking for but the most important thing is that your symptoms are treated. Plaquenil can take up to six months to make a difference although it does make a difference to some people earlier than that.

At least you have a doctor who will treat you with Plaquenil, rather than one who says "No positive biopsy - no Plaq"  The other thing is that Sjogren's probably doesn't look great on insurance documents.

You have the symptoms to be here - so please do stay if we can be of help. The chances are that you DO have Sjogren's. Hopefully with Plaquenil you will feel better than you do now and it won't get a whole lot worse.

Take care - Scottie  :)
Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: genko_b on November 01, 2010, 05:01:42 PM
Just remember that the condition exists regardless of what we or the doctors label it. We are people with symptoms, not diagnoses. Of course you belong here. So many of us here have tests with "abnormal" results, meaning, the results are not what the doctors expect to see. But the docs don't know everything.

Plaquenil takes 5 - 6 months to kick in full force, although you may begin to feel a difference by 3 months. Anyway, hang in there. We are all here to help each other out.

Take care,

Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: lynnmarie219 on November 01, 2010, 06:47:43 PM

I agree with the doesn't matter what diagnosis you have or don't have here...what does matter is that you share the same symptoms as many of us do (dry eyes, sinus, fatigue, pain, etc) and are being treated with plaquenil by a doc who believes that you don't have to have all the positive test results to be treated. Lucky you! need to stay are not alone....and you do belong here! 

Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: Patze on November 01, 2010, 07:29:51 PM
Hi Ynevar,

I'm also sorry that the answers weren't better for you, and I sure understand the "undiagnosed" catergory all too well.  Don't let a Undiagnosed/Undifferentiated category get to ya as you'll have to become your own best advocate.  It can be tough some days, but you can do it, honest.

I'm also glad to see that you're on Plaquenil, and like the others have mentioned, it can take several months to finally kick in (it took almost six months for it to kick in). 

You also mentioned that "you haven't had the Shrimer test done or the Rose whatever", and I'd like to ask if you've seen an opthamologist about your eyes?  I know it's frustrating to go to "one more doctor", ack, I have way to many ologists and you're always welcome to a few of them! :D  

I haven't had a Shrimer test done as I have MGD instead of the classic dry eye, but I get a Fluorescein BreakUp Time (FBUT) test done a couple of times a year just encase the opthamologist needs to add to the Restasis (I also have Blepharitis, and I often don't know which is worse, MGD or the Blepharitis, ugh).  The dye stings a bit, but it'll give the doctor an idea how dry your eyes are (according my my opthamologist, a reading of less than ten is indicative of dry eye).  

Hang in there and take care of yourself, okay?

Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: irish on November 01, 2010, 08:31:42 PM
ynever, I am sorry that you are feeling so down and out.This autoimmune stuff is for the birds. I didn't get diagnosed for years and then when I did I found out that diagnosis is nice, but it doesn't change the fact that one still is sick. I still wasn't given any medication and I was still sick.

Finally found a better doctor. That is the key to our existence is finding a doctor. We have to just keep on looking. I made it my life's work to find a good doc and I swear I must have been to close to 25 doctors before I found one who helped me. These autoimmune diseases are so weird that the docs have a hard time diagnosing and they also have a hard time treating.

They have to be aggressive enough but not too aggressive in their treatment. Makes for an interesting life. If there is one thing that Sjogrens and autoimmune is not it is boring. We never know from one day to the next how we will feel. We can be pretty upbeat and active and in the blink of an eye our energy drains right down and out the end of our toes.

Try to explain that to someone who doesn't have autoimmune disease. We all get it whether the docs have diagnosed us or not. One thing I will encourage you to do is to try and find any free or reduced health care. I know that health care is expensive and there are a lot of programs out there for people if one knows where to look. There are some drug programs listed on this site under "articles" at the time of the home page.

All I can tell you to do is to summon the strength to endure and exist in your life as it stands now. Plan your day so that you can get meals made and rest in between. Do whatever it takes to keep the home fires burning. Most of us have little if any social life outside of our family. When we are still working we are too pooped to even care if we talk to someone after we get home from work.

When we are too sick to work we just don't care and understandably so. One thing that helps is to avoid feeling sorry for yourself cause it will get you nowhere but down in the dumps and drive people off. The other thing is to keep track of your health issues as best you can. If you need to start a journal and keep track on a daily basis or maybe only when a new or unusual  symptom shows up or changes in its intensity. We are our own bet advocate and no one but us can do this job for ourselves.

It gets old, we hate the way we feel, we miss our old life, we want more, we are angry with God, we are angry, period!!! We are angry at the doctors and the whole world. But you know what, it makes us more ill to hold onto that anger. We need to accept what is happening to us (don't have to like it) and with acceptance comes more peace and increased ability to cope with life.

Use your brain to think of ways to make meals that are cheaper, keep house in a more organzied way, get out of the house on occasion for some little trip. I will try to get to the libray every so often and usually in the winter go more as there are lots of people around and the activity renews my mind and my body.

I go there and read the papers and magazines and just look through the books and take a few out. Get involved with something that gives you a reason to keep going. I have been home now for 7 years after being ill since about age 20 and diagnosed in 2003. I am now 67 years old. I have not felt good for years and life was hard. It started to get harder though in the 80's and went downhill from there.

I get depressed and I am still not all organized and "together" but I just keep working on it. There are so many interruptions when a person is ill and sometimes life just gets put on hold. Do what you can and hang in there. You will make it. The thing that kept me going was the fact that I was not going to die from something when I didn't know what in the heck it was!!! Well, now I know---after all these years. Go girl and do all you can to make your trips to the doctor a special time. Take a book along or a crossword puzzle. Keep your mind busy and keep yourself busy making long trips to the doc more fun. Not really fun, but I got to spend time with hubby and go out to eat,etc. May have felt lousy but I wasn't going to not enjoy those things. Self pity will take all your strength as most of us can attest to. Good luck. Irish ;D
Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: ynevar on November 02, 2010, 11:25:44 PM
Thank you for the kind words everyone!  I had one private message stating that UCTD needs it's own forum.  I will stay here since I do have so many Sjogren's symptoms and until I get something more certain I will appreciate the support I can get here.

I also took the suggestion to start a support forum for UCTD.

Spent some of the morning working on it and, so far I think it looks pretty good!

Thank you everyone for the good words, means a lot to me-especially with everything still so up in the air.

Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: inga on November 03, 2010, 06:26:31 AM
This is awesome.  Good for you!  And I joined!

Keep in mind that UCTD IS an established Connective Tissue Disease.  It is NOT a lack of findings, on the contrary, it means you have positive blood work, such as an ANA, and the gamut of AI issues, with out a specific ENA marker.  To have UCTD one must have had a +ANA on two occassions, and then have the other symptoms of AI disease.  Interestingly, one can not have secondary Sjogren's with UCTD....go figure.  If one meets the criteria for SjS, one supposedly doesn't have UCTD. 

Either you develop additional antibodies over a few years, OR you remain in the realm of UCTD, which does not mean you are any 'less sicker'  means they have not identified your antinuclear antibody.....but you do have one, or two or more.  It shouls likely be called "Unidentified Antinuclear Antibody Connective Tissue Disease'....but whatever, it has a name, and it is no less serious than other CTDs, and in fact, requires a +ANA.

I have seen some with UCTD on the scleroderma forums, as well, but it needs it own forum, since, I believe this diagnosis will be more common in the future.

Sjogren's Syndrome is the only AI disease that one can get 'secondarily', unless one has UCTD.  I guess they assume with UCTD that sicca is a symptom of that disease?

All that said, I'm sorry you have UCTD.  But at least you have some answers.
Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: ynevar on November 03, 2010, 10:04:30 AM
Thank you Inga!!! 

It is definitely a diagnosis!!

I am glad you joined!  I will be working on that site and seeing what I can do to make it as helpful as possible for everyone!

Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: gphx on November 03, 2010, 05:12:41 PM
See? What would we do without you? =)
Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: ynevar on November 03, 2010, 05:53:49 PM
Ha----I will see what I can do to keep you mildly entertained heehhe... :D

Title: Re: Not sure I belong here? Biopsy and Depression...
Post by: ynevar on November 03, 2010, 07:34:38 PM
Sometimes I just hate the written word--I wanted to say I did not mean that in a sarcastic way--I was chuckling when I wrote it and was thinking that I am happy to be here... :D  ty ty....