Next on the list: Liver.

[eija]

I have been reading the posts but haven't been up to replying to anything. Sorry about that... But here's a collective welcome to all newbies - so sorry you need this forum, but also nice to get new "faces" here. Also I've seen lots of tough issues going on with people again. When do they ever end? I mean the list seems to be just going on and on and on. I think you lot have had enough already! 

My own list was continued again today: I had the CT-scan (with and without contrast) for my kidney cyst. Guess what? They found two or three lesions on my liver! They also want to investigate the cyst some more, so it'll be another ultrasound for both organs, this time with contrast.

I've been having lots of stomach problems, very variative ones. I can go from constipation to explosive diarrhea - and vice versa! - in an instant. I have weird pains in both upper and lower left part of my stomach. The upper right part keeps reminding me of the gallbladder (and from a liver problem???) as well as an occasional stinging in my right shoulder, under the collar bone. My lower back and the area below shoulder blades sometimes ache - not sure if it's from muscles, joints or stomach problems.


Also, upper stomach, in the middle - just below the breast bone - often feels very heavy. It's not a pain, just a pressure. Like a feeling of a too full stomach. Plus there's indigestion.

Yay. I've never had real problems with my stomach, and now suddenly it's like Wild West! Just wondering if it's from SjS or something separate. Not that it really matters, I guess.

Once they get the ultrasound done again the surgeon will place me on the queue for gallbladder surgery. I guess he's waiting with that so that in case the kidney and the liver need some procedures, too, that can be done at the same time.

Tiredness/fatigue is humongous, my eyes are killing me and muscle weakness makes me postpone hair washes and makes it hard to brush my teeth. Headaches have found me again. But other than that I'm pretty ok, I guess. Just downcast, big time.

[Velcro]

So sorry to hear all of that but very glad your Doctors sound like they are on top of it.  I hope you find some relief soon.

[Carolina]

Oh my dear eija,

That is just plain scary.  It could all turn out to be ok...or at least manageable.  But the findings along with all the 'drama' going on intestinally is both frightening and terribly tiring.

You never know what's coming at you each day.   And finding more with each procedure is hard to take.

As far as the possible relationship between stomach problems and Sjogren's, I don't know for sure.  I do think that once Sjogren's is in the picture, there are many other conditions that can come along with it.  Not part of it, per se, but another Immune Mediated condition.  The ones that come to mind are autonomic dysfunction, where the normal actions of your gastric system are disturbed  due to nerve malfunction, so food doesn't move properly.  Gastroparesis is one diagnosis I've seen here several times.

It is possible to have both 'problems that need to be treated' and what are sometimes called 'incidentalomas" which is a JOKE way of saying things that show up on a scan or test, that may or may not be there, but aren't really a problem.

For example, when I had three MRI's of my head, it was found that some of the arteries don't' have the proper branching, an abnormality that doesn't make any difference.

There's a scar on one of my lungs that looked like a tumor on a CT scan, but on further imaging turned out to be a scar a not so important.

On one X-ray it looked like I had an aneurysm of my aortic arch...very scary.  That's when I had the CT scan, and the entire aneurysm disappeared, but the tumor on my lung showed up!  And of course on a third test that turned into a scar.  And so it goes.

So it is possible that you have problems, but  you are also finding things that ordinarily wouldn't be found and aren't problems. 

But right now everything has to be feeling like an on going horror show. 

All you can do is keep breathing, rest as much as possible, try to keep your mind as quiet as possible, and as centered on positive images and visions of health and happiness.

easy to say.......

Keep us posted, eija.

Hugs,  Elaine

[cccourt1942]

Hi Eija,
    Good grief. You hit the trifecta.  I am going to skip over the first part of your email.  I have no idea about those liver and kidney probs.  But the other symptoms...well...they do sound like gallbladder.  When an urgent care physician suggested I was having a gallbladder attack (after the PA kept trying to make my discomfort fit into my GERD) I knew I couldn't see my gastro for about 6 weeks (holidays).  I went online and discovered "gallbladder diet."  No..not a diet to lose weight...one which tells you what to eat to avoid the attacks.  I didn't have my surgery until over 2 months AFTER that day.  I never had another attack cause I followed the suggestions.  IF...and I am not a doctor....IF the real pain is coming from your gallbladder, the diet tips will help you immediately.  BTW:  They removed TWO ping pong sized gallstones!  (well..they had to break off the pieces to extricate them!!)
    Good luck hon,
ccc

[Carolina]

Wonderful, ccourt, to share your gallbladder experience, because you recognized that eija's symptoms are possibly from the gallbladder that she will have removed at some point soon.

To me, this is the one of the benefits of our forum.  It's of course possible that it isn't all gallbladder. 

But I just zoomed over the last mention of gallbladder surgery and didn't connect that at all with her symptoms, because, of course, I haven't had that experience.

eija is in Norway (I think, or another country in that area) so she probably won't read your post until it's morning.  But I would think she would find it comforting.

And I do know that 'stuff shows up' on scans that eventually are ruled out as a problem, or 'watched' to see if something develops.

I just Googled liver lesions and got: 

Masses within the liver are increasingly being detected inadvertently when patients are evaluated for unrelated reasons. These liver masses are usually benign (non-cancerous) in patients without underlying liver disease and usually need no specific treatment

http://www.cpmc.org/advanced/liver/patients/topics/noncancerous-lesions-profile.html

And here's what I got on kidney cysts:

A simple kidney cyst is a round pouch of smooth, thin-walled tissue or a closed pocket that is usually filled with fluid. One or more may form within the kidneys. Simple cysts are the most common type of kidney cyst. They are not the same thing as polycystic kidney disease, which is a progressive disease that can lead to kidney failure. Simple kidney cysts most often do not cause harm.

http://www.webmd.com/a-to-z-guides/kidney-cyst-causes-symptoms-treatments

I'm so hoping it's all right.

Hugs,  Elaine

[nannysbaby]

You have been through so very much in these last few months!  I am so sorry you are going through so much painful stuff!  You have to know that we understand your pain and the anxiety of always waiting.  Waiting for a dr, waiting for a test, waiting for a result, etc., etc.  That by itself inflicts another type of pain on each of us along with uncertainty itself.  Our prayers and hugs are headed your way while you await and go through all these tests.

[eija]

I'm so tired. My head has been hurting almost every day for I guess nearly a couple of weeks. My eyes are killing me - but weirdly enough, I just cried, actually with plenty of tears!

The invitation to the ultrasound came very quickly, already yesterday, so the surgeon must've sent it the same day I had my appointment with him. However, the US won't be until March 7th and then the call about the results on March 17th. I hate waiting. I have googled and read a site after another about kidney and liver lesions, as if that would help anything since nobody knows at the moment what mine are.

But actually I'm not really even thinking about the whole issue that much, because my spirits are so low for other reasons. My brain is on a prolonged vacation or something - things are slipping through my mind (and actions) without me even noticing it. Or in some cases, I'm 100 % certain I've done something (like closed the garden gate when leaving home) and then it turns out I didn't. It's scary.

You never know what's coming at you each day.   And finding more with each procedure is hard to take.

Yep. Already tried to figure out what will be the next issue they'll find in the coming US. Let's see... gallbladder, check. Kidney, check. Liver, check. I'd say pancreas? Sigh. Glad your "incidentalomas" turned out to be false alarms. Hoping mine will too. But I hate the idea of a "simple cyst which we just have to monitor in case it decides to become malignant". 

As far as the possible relationship between stomach problems and Sjogren's, I don't know for sure.  I do think that once Sjogren's is in the picture, there are many other conditions that can come along with it.  Not part of it, per se, but another Immune Mediated condition.  The ones that come to mind are autonomic dysfunction, where the normal actions of your gastric system are disturbed  due to nerve malfunction, so food doesn't move properly.  Gastroparesis is one diagnosis I've seen here several times.

Actually I found out that with Sjs we're more suspectible to liver disease than non-Sjs-people. Fun, huh? Anyway, with my stomach symptoms, gastroparesis has crossed my mind, too. But the symptoms fit also with gallbladder, liver and even kidney problems. So I'll have to wait for the ultra, the diagnosis and finally the gallbladder surgery. If the symptoms persist even after that, then at least one factor is excluded.

Good grief. You hit the trifecta.

Yep. But I'd rather have hit something like the jackpot in lottery!

I went online and discovered "gallbladder diet."  No..not a diet to lose weight...one which tells you what to eat to avoid the attacks.

As I mentioned above, gallbladder symptoms can be very similar to those from kidney or liver lesions. Annoying! As for the diet, yes, I'm watching what I'm eating just because of that. And especially what I'm drinking - coffee is bad so I'm keeping it to a minimum. I haven't had a real attack since December, just milder discomfort, as well as some symptoms that weren't there during the big attacks. However, the surgeon said they too can be caused by the gallbladder.

eija is in Norway.

Close - just two countries to the East from Norway and there I am: In Finland 

And I do know that 'stuff shows up' on scans that eventually are ruled out as a problem, or 'watched' to see if something develops.And here's what I got on kidney cysts:A simple kidney cyst is a round pouch of smooth, thin-walled tissue or a closed pocket that is usually filled with fluid.

As I wrote in my previous thread (about the kidney cyst), mine is not just a "simple" one - it has a septation or septations inside it and that makes it a "complex" cyst. And means that if it turns out to be benign at the moment, it still needs to be monitored. They won't remove it "just in case" because that could cause me to lose the entire kidney.

Velcro, nannysbaby, and everyone above - thank you for your warm words, thoughts, prayers and sympathy. Thank you. I know I'll (probably) live through this, too, even though it's tough.

[Carolina]

Oh, eija, did remember afterwards that I had heard about cysts that weren't simple from YOU.  Sorry.  I was so hoping! 

I'm such a dull Yankee, get all those countries confused.....Finland, it isn't even part of Scandinavia, right?

I thought I remembered at least that much, but I did check before I said it.

I do hope things go well.  The waiting is hard.  That's for sure.

Hugs,  Elaine

[cccourt1942]

Eija,
    It's posts such as yours which make me believe so many of you could go to medical school....and breeze through!  I have to google most of what you post.  I mean...my Latin is rusty and I can figure out septations...but a complex cyst?  Not to mention your clever word creations!  Very cute. 
    You may feel horrid, but your sense of humor is priceless.  It may be what is helping you cope.  I worry on each and every day.  I can't get busy enough to get my mind off all this.  And I just have the "progression" issue to make me nuts.  You have so much going on. 
    And Finland?  Go figure.  Should have known with your lovely name.  And I believed Finland was  considered Scandinavia.  Carolina is so smart.
    I hope you have had a great day.  I hope you sleep well this evening.  And I hope you can turn off your "worry" center for some brief periods of time!  AND...YOU MADE TEARS.  REAL TEARS!!  Last week-end I watched the saddest movie I could find.  I can bring a tear (well... a dab of moisture) up to my tear duct..then it just sets there until it crystalizes!     Entertain us by telling us what it felt like to have moisture rolling down your cheeks! 

[eija]

Elaine - don't worry. I'm one to struggle with such brainfog these days that I'm starting to be afraid of driving

---/ geography nitpicking /---
Finland isn't actually part of Scandinavia (although very widely it is considered to be these days) but a wider area called Fennoscandia. Or the Nordic countries (Finland, Sweden, Norway, Denmark and Iceland). Finnish language isn't one in the group of Scandic languages, though.
---/ end of geography nitpicking /---

cccourt in time and with lots of googling one learns the weirdest things. AND from this forum! I'm in awe of some people's knowledge and understanding here. My foggy brain has no chance competing them   As for word creations - I do that, yes, but in Finnish. In English, too, sometimes, but mostly it's accidental due to insufficient language skills    If you mean the word "incidentalomas", that's something I can't take credit for, someone with way more imagination created that one!

TEARS. I hate crying. I do. Because if I cry it means I feel crappy for one reason or another. Plus it makes my nose stuffy and my head hurt. But the actual tears... They were like smooth cool water on your body after working with something very hard, sweaty and dirty. 

Life without sense of humour, in my opinion, isn't worth it. If you don't have sense of humour - GO BUY SOME. If you can't, then GO STEAL SOME. Or something. What ever you need to do, FIND YOURSELF SOME LAUGHTER. Even the hardest things are at least a little easier if you can laugh at them/through them. I'm convinced of that. And it's always good to laugh at yourself 

I guess it's day three now without a headache. Yipee! Yesterday I actually climbed on my horse for the first time in months. She's so precious <3 Tomorrow I'm going to the hospital again, to pick up a thingie for sleep registration (I guess it does have a real name too) and then try to sleep with it. Remains to be seen what will it show. So at least I have this and that to keep me busy while waiting for the lesion examinations...

You guys are priceless.