my lymph nodes tend to stay enlarged
havent had anyone tell me my spleen is
i seem to have lots of mri, cts, and xrays i think when a person is sick often it comes with the terrority

Me too. Always have inflamed, large lymph nodes. My speen is off and on. Most of the time it's pretty swollen. I have Sjorgrens also, which may explain my hoarse voice. It's just something that is. Unless I am hospitalized no one makes any noise about it, probably because there is nothing they can do.

Ok so I have a couple of thoughts lol SURPRISE haha has he checked your platelets? The reason Im asking is an enlarged spleen can be caused by ITP - which is often a precursor to a CVID diagnosis - I had it many years ago and had a splenectomy.

Also, has he discussed chronic granulomatous disease? Could explain the swollen lymph nodes:

Physical examination may show an enlarged liver (hepatomegaly), enlarged spleen (splenomegaly), and swelling of multiple lymph nodes all over the body (generalized adenopathy). There may be signs of a bone infection (osteomyelitis ), sometimes affecting multiple bones.

I have a lung disease and they are treating now but wont do another ct scan for 9 months because I've had so many - so thats good he's doing them far apart.

My mean platelet volume is consistently low, and the CTs show waxing and waning nodules in my lungs and a couple in my kidney. The pulmonologist has suggested granulomatous disease. The ITP sounds like a possibility, I'll have to research it a bit. I don't seem to have anything that would indicate Sjogrens, no problems with dry eyes or mouth. It's good to know that this seems to be another facet of CVID.

Thanks for all the info!

Tina

Two years ago I had pretty much the same symptoms that you are experiencing. I ended up having a splenectomy due to a VERY enlarged spleen at the recommendation of my pulmonologist and everything came back fine. I didn't have lymphoma or anything. However, my dr's are still trying to figure out a ong term treatment plan for me. An abundant amount of lymphocytes were taking over my spleen and are now doing the same to my lungs--causing me to have less air space. We were trying steriods but now my dr. doesn't want to go that route due to immune suppressing. So, I'm going to see a hematologist soon. I did have a lung biopsy in January and it was determined that I have a form of rare pneumonia called lymphoid bronchiolitis or GLIP. I have to tell you that I am so much more comfortable with my spleen out, though!

Hi Tina. I have an enlarged spleen, and probably got it with mono ten years ago. At that time I also got diagnosed with ITP, which also can come with mono. Some of the signs of ITP are bruising and bleeding. And petechiae, which is like reddish or purplish rash-looking patches on the skin. (Which is actually bleeding under the skin.) A low platelet count, and ruling other things out with the bone marrow biopsy, is how I got diagnosed.

So I have had my enlarged spleen for ten years, and though they had wanted to remove it initially, I have heard with CVID they don't rush to take it out. I feel pretty good right now. I get my infusion on a regular basis, and think that helps immensely.

As for x-rays and scans, I have the ones I need. When I had pneumonia they wanted x-rays every day it seemed. I recently had my first cat scan. Hated IT! Sometimes you get to say no. Maybe space them out a little. You have to be your own advocate. That's one thing I've learned! Take care!

It sounds like this is common. My spleen was enlarged due to ITP, but I had to have it removed, because it had destroyed almost all my platelets. That is easy to check with a blood test though.
I am concerned about the CT scans too, since I have had lymphoma and a lot of PET scans. My immunologist is new, and had wanted a CT "just to check" my lungs for damage. The doctor who knows more about my history was going to let him know that it isn't a good idea to check if nothing is suspected. They still monitor me for unusual lymph nodes, but not very often with scans. If that changed though, I'm sure I would be getting those scans again.

Geesh.. With everything we have learned over the years.. Where is our medical licence?

Anyways.. I have the enlarged lymph nodes all the time.. Not sure about the spleen. but my gut and chest are swollen most of the time so who knows... I haven't has any CT scans.. just lots of blood works and scopes in places the sun doesn't shine.

But the radiation that in in the CT scans are very minimal compared to years ago... ( I took some x-ray classed when I was first out of high school).. Just make sure that when you have an x-ray they use the shield/vest over areas that are not being scanned. that helps alot..

Good luck.. :)

i have an enlarged spleen but somehow the results didnt say the size and my dr was puzzled as to why. gonna go this week and ask to get it repeated and be sent somewhere else because ive been having really bad stomach pains etc.,

I feel a lot better about this now. After all your thoughts and a bit more googling, it's just another thing to keep track of.

NeeNe, when I had my CTs done I asked them for a copy of the scans and report. It was not an additional charge. They gave me a cd with all of the images, and I can browse through and play "whats that organ?". Come to think of it I could replace my avatar with a ct of my spleen!

I'll talk to my Hematologist about the platelet numbers, I know she is testing them regularly, but hasn't seemed concerned.

my regular dr had a copy and it didnt say anywhere on it the size. just said spleen enlarged. they somehow along the way that got brushed under the table and while going thru things for my new dr my mom saw it and she just brought it up recently because ive been having severe severe stomach pains and now its even when im not eating along with back pains etc., and its right were the spleen is and im not getting the pain on the right side. so my next appt. we will bring it up;

So does that mean we will be getting cancer due to the lymph nodes? Boy this is getting really scary:(