Saw hemotoligist today

duniegirl · Regular Joined: 27 Apr 2007 Posts: 12

Hi all! I saw the hematologoist today. She did a blood draw right in her office. Then an exam. She said non of the nodes are big enough to biopsy yet. She is ordering a ct scan of ches (just had an x-ray that was fine.) ANd a cat scan of stomach. If these are clear she said we have to wait and see if the nodes get bigger. I was frustrated though b/c she says the nodes on my grion are not nodes but my skin dimples from my underwear. I was surprised but let it go. I got home a nd checked again and you can clearly feel them. Not one but two or three on the groin/bikini line. You can even see them by just looking. Anyway with the groing nodes aside she took me very seriously. She doesn't like the wording of the nodes biopsy from last year. It states it was worrisome for marginal b cell lymphome but final conclusion was reactive with b cell hyperplasia. It could have been a very early lymphoma or some kind of infection that I can't beet.
I am dx with CFIDS and Fibro but when I saw the new nodes (behins my ear, behind my head and I thought was the collar bone (she said she couldn't feel a node there but could see the puffiness at the collar bone) I panicked.
What could cause the collar bone to become puffy and swollen if the node is not swollen? I saw the swelling before I started messing with that area. So I doubt I made it puffy by touching. It has been like this for 2 weeks. And I am on antibiotics for one month trying to treat the CFIDS.

ANy input??????????

Thank you, Deena

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

Deena,
Could you tell us what CFIDS and Fibro are? Always consider a 2nd opinion by a major center when the situation is unclear.
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

duniegirl · Regular Joined: 27 Apr 2007 Posts: 12

Hi all. I am sorry for assumming that everyone knows. I should know better from my dilema on the disease. CFS is Chronic Fatigu Syndrome and Fibromyalgia goes with it. It is a chronic disease with no cure. However it is not life threatening. It is like living with the flu everyday. Fatigue, sleeplessness, dizzy, low grade fever, chills, all over pain, night sweats, memory loss, balance problems, lymph nodes, IBS (irritable bowel syndrome) sore eyes, ect ect.
But when I first got sick it was just lymph nodes, fevers and night sweats. Then it progressed to all over pain. Ect. When I woke up now three weeks ago with the nodes I got scared all over again.
Last year an ENT biopsied a suspiscious node and basically told me he felt it was lymphoma and there were treatments. The initial pathology reprt was worrisome But in the end it was reactive with b cell hyperplasia.
My question was has anyone had reactive with hyperplasia node only to have another one come back malignant??????

Pls someone answer me.

Deena

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

Deena,
If you still have lingering concerns, consider a 2nd opinion. Keep healthy and keep working with your doctors regarding your other heath issues. Good luck.
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

tulip63 · New User Joined: 02 May 2007 Posts: 2

DunieGirl -

Your story intrigues me. I also have a lump above the right collar bone (about the size of an olive). Like you, I initially had swelling in this spot as well. The only continuing issues are a sore shoulder (feels like apinched nerve) and a weird feeling in my right arm. Have your received any input on the swelling above the node?

Of course, I've spent way too much time on the net trying to diagnose myself. Have decided to stop "messing around with" the lymph node and monitor for a few weeks. If the size has not reduced, I will seek medical advise.

Best of luck to you and everyone on this forum.

duniegirl · Regular Joined: 27 Apr 2007 Posts: 12

Hi Tulip63, The hemotologist said she cannot actually feel a node above my collar bone. But it noticably swollen in the area right above the collar bone. I even just had a friend look at it. If I raise my arms like pulling my hair back the right area is definately swollen. ALso the node behind my ear and on the back of my neck.
The blood test came back normal. The doc is now fighting the insurance company to approve two ct's one of chest and one of abdomen.
Then we have to watch and see.
I haven't had a low grade fever or night sweats in a week or so. But I have monitored my cycle's and it is not related to periods. My ob is waiting for blood tests to confirm one way or another regarding perimenopause. But does menopause cause lymph nodes?

Any way back to your post. My right shoulder aches as well. Like a pinched nerve. Something is just not right.....
Let me know how it goes with you...
Thanks, Deena

tulip63 · New User Joined: 02 May 2007 Posts: 2

Good news on your hemotology report. My "bump" has - I think - actually gone down in size from an olive size to an olive pit! Pretty descriptive, huh?! However, my arm still feels weird. I've read (though I had sworn off the net) that some of this could be carpal tunnel or vascular. On a similar site, someone with similar symptoms found out the lump was actually a hemangioma. Another person reported that her doctor said her lump was a vascular mass.

I'm not one to quickly go to the doctor, but plan to schedule a physical for June. I'll bring this situation up at that time and hopefully find that there's no reason for major concern.

The positive result of all this mess has been a renewed (and much needed) commitment to living a more healthy lifestyle. Good luck in your continued problem solving.

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