How can everything be wrong?

[Tuurre]

Hi

I have a severe case of Primary Sjogrens syndrome and i know that! but why am i ( my body) so special, everything is wrong according to how it usually manifests.

26 year old when i got ill
Male
No antibodies
No dry mouth
No joint pain
and now negative on the lip biopsi!

Schirmers test is the only test that's positive 0,9 and 0,1

How can this be? What is wrong with my body? How can the lip biopsi show negative with a suvere sjogrens and propably lymphoma?

I got almost everything else i believe and from day one.....
Polyneuropathy 24/7 all over
Suvere visionproblems
Brain damage
Dry everywhere except the mouth
Bowel and bladder problems
Etc etc

And last year
Purpura
Propably lymphoma, swollen nodes everywhere
Vasculitis?

Best regards / Tony

[gold55]

I don't know Tony and only a team of good doctors can answer your questions.  I sure hope you have access to at least one good doctor.

I have been thinking about you and will keep you in my prayers.  I am so sorry you are going through all of this.  After reading your story I have no right to complain.  Take it easy and try to get rest.  When do you see the doctor again??

[irish]

I am curious how much of your health issues the doctor has diagnosed. Do not take this as a bad question. The reason I asked is that when people have very little positive tests the doctors are so slow to diagnose. Sooo, I am wondering if the doctor has said that you have primary sjogrens?

I assume that he has. So often the doctors don't like to put a name on a disease unless there is positive blood work. One can have all kinds of symptoms without having positive blood work or a positive lip biopsy. In fact there is a very high percentage of patients who present with all the symptoms without any positive tests whatsoever.

I guess I would not draw the conclusion that you have lymphoma until you have seen the doctor and had the appropriate testing done. Lymph nodes are really weird tissue and they can get so swollen and sore and not be lymphoma. We have lymph nodes in many places so if the body is out trying to kill us off and sending out all these antibodies our lymph nodes are tyring to strain the darn cells out to protect us resulting in the swelling of the lymph nodes.

I am curious if anyone has put you on plaquenil earlier in your illness. This does have the strong anti-inflammatory effect that can help more than one realizes. Also, it is true that some people find that they get little benefit.

Please know that illness can happen to anyone.  It just happens. It is how we deal with the illness and huge changes in our life that is so important. It isi mportant to keep up and doing as much as a person can in order to keep our body and brain busy.

Our lives are definitely changed forever, but I am of the opinion that we need to hold our head high, do what we can and learn what we need to leave undone or put off until later. We have only one life on this earth and we can choose how we spend it. Having a diagnosis is nice ( I didn't have one for about 40 years, I just didn't feel good and had a lot of down days, missed months of work, etc and some days didn't think I would make it through til the next morning) but somehow just putting one foot down at a time and plugging along I made it to age 69.

I look in the mirror and don't know how I got to this point, but here I am, not worth a lick, but do what I can-when I can. So hang in there and think as positive as you can as it does make a difference in how your illness progresses. Good luck. Irish

[gold55]

thank you Irish.....I don't have the experience to be comforting anyone here.  I can only put them in my prayers.  You gave our new guest a lot of good things to ponder. 

[Tuurre]

Thank's so much for your replies.

I'm out so late and have'nt got a rheumadoc. yet! Seeing her the 4:th of june!
Believe i'll get the lymphoma diagnose prior the sjogrens diagnose, just returned from the ct scan and the thing that bothers me is that they were letting me go and suddenly they wanted more pics, so it does'nt look good.

Regards Tony

[eye2dry]

Tony....please calm down.

I am on my lap top thousands of miles away and I can feel your panic through cyber space.

Listen to Irish.

I find that the thing you worry about most...seems to not happen.
Worry and concern make us take action...like schedule a dr. appt but way too much worry makes us anxious and panic and throws gas on the flames.

I myself have to remind myself of what I just typed above.
Listen to what Joe S. says as well


take care....and we care.

eye2dry

[cremer]

Tony I can only echo what irish says.

You seem so keen to get these diagnoses. If you haven't been diagnosed yet with Primary Sjogrens or Lymphoma, then I cannot understand why you would want these so urgent. I can understand that you are fed up, it's been a long time waiting, but you shouldn't hope for a nasty disease.

Sit back, let the docs do the tests, they might find something else far better thats causing these problems.

[Tuurre]

Thanks guys for your replies, letting me see my behaviour. It's true feel like a little kid blowing in the wind!

Started laughing reading Eye2Dry's comment. LOL......

You're right i would'nt want the sjogrens diagnose but i'm a 100% sure of that going thru my last fourteen years which has been a living heck! So just give it to me so i can have meds for it.

I'll try to be a bit calmer

Got the ct test results, that was good was that the spleen, pancreas and kidneys looked fine and no swollen lymphnodes in the abdomen/cheast, i dont know how much they can see on a ct scan? the liver size was normal but they found small cysts in the liver and something wrong with a blodvessel!? So i'm going for a ultrasound next week. Can Sjogrens affect the liver?

I'm on no medication (eccept cipralex for three months) and i'm sober five years back!

Does this ct scan indicate/tell anything, good or bad?

Best regards Tony

[Crymeariver]

Tony,

Lymphoma can only be diagnosed through a surgical biopsy. They would need to type or classify the lymphoma.  Then they would do PET scan of the body which measures the metabolic activity in your body.  Cancer is more metabolically active and shows up as hot spots. They can use the CT scan to measure node size and find one for removal.

Lymph nodes can swell because of infection or inflammation in the body.  Your 'cytology' on the neck node indicated that it was not malignant (I'm guessing you meant surgery).  I had an inflammatory process in my lacrimal gland and the node under my jaw/ear was as big as a golf ball (looked like a tennis ball to me on the CT).  After surgery it went down to normal size.  Perhaps the liver problem is causing something systemic??  You've had pretty good news so far so continue to hope for better.  Hopefully the ultrasound will lead them in the right direction.

Please try to wait for the test results and doctor's diagnosis.  Your case does seem complicated and there are over 80 autoimmune disease and other possibilities.  I can hardly hazard a guess as to what might be going on.  It rarely pays to self diagnosis.  We all know how hard it can be to wait! 

Good luck and let us know how the ultrasound turns out.

Sarah

[cremer]

Hi Tony

A rare disease that is uncommonly associated with Sjogren's syndrome is primary biliary cirrhosis, an immune disease of the liver that leads to scarring of the liver tissue. But you wrote that you have been sober for five years, does this mean that before this date you could have damaged your liver through alcohol.

The cysts you describe could be an effect of alcohol, as I said before wait for the correct tests to be performed, there are so many possibilties.

[Tuurre]

Hi guys

I dont believe me drinking before has anything to do with the liver issues, did'nt consume that much, quit cause i felt more and more allergic to alcohol, finally my body did'nt like even one beer!?

The liver issue is something with sjogrens, thats just a guess!? Hope not lymphoma!?

So the ct scan does'nt say much, is'nt it positive allthough that it did'nt show an enlarged spleen and big lymphnodes where they looked?

/Tony

[anita]

I really think you should relax until the 4th.  The lymph nodes are probably just inflammation or a mild infection.  Your regular doctor should have done routine labs. 

You need to know that sicca can be caused by neuropathy itself, so you may not have sjogren's, since everything (including lip biopsy) is negative and you don't have dry mouth.

Give the rheumy a chance to evaluate before you get too wound up over this.  You'll need to be patient.  You can make maters worse with all your anxiety.

[jazzlover]

seems that a negative CT scan is a very good thing!

[gold55]

I've also heard that diabetes can cause dry eyes, mouth, joint pains, etc so a lot of the same symptoms we see in SJS can really be caused by other disease.  I've read that pre-diabetics can also experience peripheral neuropathy so it is important to let the drs run all the tests before we worry about our diagnosis.  I'm at fault for worrying as my family has so many bad health issues and I've avoided them up to this point.  At times I feel the wall is going to come crashing down at any minute! 

[Cheryl]

Tony,
I just want to assure you that cysts on your liver don't necessarily mean there's something bad going on.   I have some cysts on mine that were found 12 years ago, and they are still unchanged.   Good luck with your results!
Cheryl