Lymphoma

[laurenmarie614]

I am a teenager and found a lump in my abdomen a little over two weeks ago. There was also a lot of swelling around my entire stomach. The lump was hard and tender to the touch. I also presented with other symptoms such has low grade fevers (on and off), night sweats, difficulty breathing, loss of appetite, nausea, fatigue, and the list goes on. I went to the ER on Sunday after the lump got larger and the swelling was becoming worse. My ER doctor ran a CBC (complete blood count) and a CT on my chest and abdomen. Both came back normal but he told me he was still concerned about Lymphoma and that the CT "maybe" could have missed it. He said he was going to treat it as an infection with antibiotics and if the lump hadn't gone away in a week, I'd need a biopsy. I came home and I began to feel one hundred times worse, it was unbearable. We called the hospital I had went to earlier in the day and they thought I would need to be admitted so they suggested I go to the children's hospital. I went, and got a brand new intern as my doctor, who refused to do anymore tests or listen to a word I said. She did the same CBC and sent me home. Last night, I found a new lump in my lower abdomen. It was hard also and tender to the touch. I also had pain on my sides and in my neck. I went to my general practitioner, who as I expected, didn't listen to me. She didn't want me to get a biopsy, and totally blew me off. She did do more blood work though - another CBC, something else and a LDH. She said "if" something alarming was found in my blood work, we'd do an ultrasound. She also told me they found fluid in my abdomen (which I didn't know before). I am becoming aggravated with doctors and not being listened to… as I know my own body and know that something is not right. Has anyone here dealt with symptoms like this or doctors of this nature? Any suggestions?

Thanks!

[Mochadelicious]

Still sounds like a stone, Lauren.  Have you seen your doctor yet to go over the results?  If it is a stone, if it's small enough you will probably have to let it pass on it's own, which isn't much fun.  If it's too large to pass, they have ways to break it up without surgery.  

I was thinking that this post is probably getting too long and you should start a new one next time you post, or you can send me a private message if you'd like.  Take care, Lauren.  

[laurenmarie614]

Well, the MRI of my back was normal. But they found some abnormal things in my urine - crystals and hemoglobin. Not sure what that could mean...

[laurenmarie614]

The pain is in one spot on my lower spine - however, it causes my entire back to hurt. Last night the pain felt almost like there was a large weight sitting on top of my back.

Ouch, that sounds so painful!! I've never had a kidney stone but I've heard how excruciating they can be. I guess I'll just have to wait and see what the MRI results are, but it's hard not to guess until then!

[Mochadelicious]

Even though you had an xray, now that I think about it your symptoms sound a lot like a stone.  Stones can get lodged in the kidneys, bladder or ureters.  Nausea goes right along with it.  Is the pain on one or both sides of the spine?  How high up is it?  

Several years ago I had to have surgery to remove a very large stone in my right kidney.  It was so large that it filled the whole inside cavity of it.  The pain was excruciating, much like you described.  The kidneys lie a couple of inches above your belly button and the pain is higher up, more in the middle of your back.  However, if you had a stone in the ureter or bladder it would be further down causing lower back pain.  I would think an xray would catch a stone, though.  It was an MRI that caught mine.    Anyway, it's probably best to stop guessing what you have and see what the MRI says.  :-)

[laurenmarie614]

It's all from my back...yes. It hasn't gone away since it first came on (two weeks ago). It came on like a light switch, I hadn't injured myself or anything.

I didn't have a good experience at the ER. They put me in fast track and didn't even start an IV. They didn't give me any pain medication. We had to practically beg them to at least do blood work.

My doctor prescribed some more pain medication as well as something for nausea. They have me on four different medications now - it's nuts!

[Mochadelicious]

Wow, Lauren.  This is from the pain in your lower back?  Well at least now you'll get that MRI.  Hopefully you'll get it soon and get the answers you need.  

As for the pain, I'm suprised the doctors in the ER didn't give you something stronger than muscle relaxers.  If the pain is as bad as you describe, you should call your doctor and ask for something stronger.  

Keep us posted on your MRI results.

[laurenmarie614]

I am getting an MRI...thank goodness. I've never felt such pain in my entire life. The muscle relaxers haven't helped one bit. The pain leaves me breathless - absolutely nothing I do brings relief, no medicine relieves it. It's constant and hasn't gone away for even one second. This is TORTURE!

[laurenmarie614]

Well, last night was very interesting. The pain left me unable to walk and things were not looking good. I was taken via ambulance to the local children's hospital. They gave me so much medicine that when I woke up this morning, I had no memory of what happened last night. But they did not do any further tests, they seemed more occupied with knocking me out! They wrote a referral to my doctor for an MRI.

I still feel EXTREMELY out of it, can't walk or keep my head straight. Took my muscle relaxers last night and they didn't even touch it. :(

[Mochadelicious]

Your so welcome.  I hope the pain goes away on it's own soon.  I know how miserable it can be.  Hopefully the muscle relaxers are working.

I'm glad to hear about the reduction of the lump in your abdomen and no more night sweats or fever.  It's strange that no one was ever able to figure out what it was, but it sounds like it has mostly resolved itself.  

I have a cough now too.  I think it's just that time of the year.  Take care and keep us posted.

[laurenmarie614]

Yeah, I'm not sure how it could cause back pain - but the ER doctor made it out to be almost life threatening. I just don't see how I could have that, with no other symptoms. He said my spine looked fine, "textbook" actually - but he still wanted further testing. He also suggested a CT of my head.

I definitely haven't injured my back in any way. The pain was very random and sudden. Came on like a light switch. I just recently got a new mattress this year - it's pretty nice!

My GP also prescribed a muscle relaxer - he said it should help some. As far as my stomach, still swollen - but I've accepted it's not anything, it's been so long now and so many tests were done on it. Lumps gone except for a small one in the same spot as the very first one I found.

I've just had a fever of 99 - which is basically nothing. As far as night sweats, not anymore. I have developed a cough that isn't going away, though, and my difficulty breathing has gotten a lot worse.

Thanks for your response!

[Mochadelicious]

Hi lauren,
Welcome back.  Sorry you are having so much trouble with your health.  The x-ray was of your lower back, but they can probably see your bowels (intestines) too.  An ilius might explain the nausea but I'm not sure if an ilius can cause back pain, unless it is somehow causing pressure against your spine.  Did they find anything wrong with your actual spine?

As for a herniated disc, I doubt that would be causing you extreme nausea and headache.  Do you remember doing anything (like exercise, extreme movement) to hurt your back?  How's your mattress?  Until recently, I had an old mattress and I suffered with lower back pain for years.  Usually it was during the night and in the morning, just like you.  Some mornings I could hardly get out of bed due to the pain.  Last month we got a new mattress and my back feels so much better.

I'd try and wait it out a few more days and see if the pain goes away.  If it doesn't it would be good to see your doctor again about the MRI.  BTW, how are the lumps in your abdomen doing?  Have they gone away?  Do you still have the fevers and night sweats?    

[laurenmarie614]

Hey guys! I could use your help again - as I'm really at a loss and don't know what to do.

My health hasn't really improved much since the last time I was here. I switched to a new GP and all tests were clear regarding my stomach. I still dealt with a few problems but nothing major, until about a week ago.

I've now developed excruciating lower back pain - worse at night and in the mornings, also worse when I am sitting or laying down - but walking and standing up brings no relief either. It is constant, 24/7, pain. The pain left me breathless last night so I went to the emergency room. The doctor first was convinced it was a UTI, but that came back negative. He then ran a CBC, which was normal. Finally, he decided to do an x-ray of my back. He told me they found an ileus (?). Which I found extremely weird, as I have had NO problems in that area and this was an x-ray of my back - not my abdomen. He recommended an MRI.

I saw my GP this afternoon, who did a physical exam and decided I definitely did not have ileus - but a herniated disc (this did not show up on the x-ray, he just assumed).

The pain is absolutely excruciating and leaves me unable to sleep. I've also been dealing with bad headaches at night/early morning - noticed a few personality changes and extreme nausea.

My GP did say if it was in fact a herniated disc, I shouldn't still be in this much pain. He prescribed a muscle relaxer and said he'd consider an MRI if the pain has not gone away in a few more days.

Any thoughts? I've never felt pain like this, absolutely never going away, nothing brings relief.

Thanks for any help!

[Mochadelicious]

Your previous posts say you changed over to a different GP and you were still waiting to see the GI doctor.  Have you been in to see any of them yet?  To me these new symptoms just don't sound like cancer, but I'm not a doctor.

[laurenmarie614]

Well, I still don't have any answers! The swelling in my stomach comes an goes, but it's there nonetheless. I've also started having lots of other weird symptoms. Pain in my arms an legs. Pain on one side of my head that gets worse when I move and basically just pain all over and the general feeling of not feeling well. Also extreme backpain. Aggravated!

[RedRed76]

Make sure when you do make the change for new GP, get copies of all the test. I have recently done the same the same thing for myself and found out there were things not told to me.

And I have now found a new doctor whom have shown more concern and see that there is an issue.

Best of Luck ( I know how you feel)

[laurenmarie614]

Hey everyone...just checking in. I still haven't seen a GI doctor, it's taking a while to get in. My abdomen got better for a little while, but now it's back to extreme swelling. Beginning to think I'll never find out what's wrong!

[Mochadelicious]

Good for you.  Sometimes it is best to do that.  I hope you get some answers soon.  

[laurenmarie614]

I don't believe it has even been made yet... my GP said it could take a while to get in. I am changing to a different GP, hopefully one that will be more understanding!

[Mochadelicious]

When is your appointment with the GI doctor?  I hope it's soon and I hope you get answers soon.  Maybe you should find another GP if the GI doctor doesn't work out.

[laurenmarie614]

I saw my GP today and she doesn't think a surgeon nor an oncologist is necessary. She again wouldn't really listen to my concerns and said she wasn't going to run anymore tests. She set up an appointment for me to see a GI doctor but that's all she would do, even though I've gotten worse! So frustrated!

[Mochadelicious]

I was just wondering if you were able to make an appointment today with an oncologist?  Are they able to get you in right away?  If it's not soon (like in the next few days), you might want to ask your GP to pull some strings to get you in earlier.

I don't know what other tests they can do, but I'm sure an oncologist would have other ideas to try.  Don't lose hope...there's answers out there somewhere, you just haven't found them yet.

[laurenmarie614]

Also - as of recently, there is blood in my urine...

[laurenmarie614]

I just got back from another trip to the ER. They did the exact same tests they did last time, blood work and a CT. The CT showed the same - fluid. The doctor said that the fluid wouldn't be causing my intense swelling, because there's not enough fluid to do that. He basically said he didn't know what was going on and to see a specialist.

So... UGH! Whatever it is, obviously is not going to show up on a CT. I called my GP before going to the ER and she recommended I should go. When I saw my GP, she did feel it and so did the ER doctor.

Really stumped... don't know what to do!

[Ken_PA]

"No discrete mass nor focal inflammatory changes"

my only guess is that the type of CT done was not the type that can detect the bump. I wonder if the ER doc ordered the CT because of the bump or because of the ascites.

did your GP say she couldn't feel it? did the ER doc?