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Old 01-07-2006, 09:38 PM   #1
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mz_barnacle HB User
Question "Permanently" Swollen Lymph Nodes?

ANY help at all I will appreciate greatly.

BACKGROUND AND SYMPTOMS:
I have had shotty swollen lymph nodes down the side/back of my neck,
behind my ears, on the back of my head, and in my groin for over two
years (or, at least I've been aware of them for over two years). When I first detected them, I had concerns about lymphomas/leukemia so I
underwent several fine needle aspiration biopsies, blood tests
including CBC and liver-fucntion, chest x-rays, an HIV test, and a TB
test, but everything always came back normal. They did discover at
one point that I had a staff infection in my scalp, which we treated
with antibiotics, but it recurs from time to time. I also have facial acne and body acne.

A year and a half after all of these tests, after three rounds of antibiotics, the lymph nodes are just as swollen, I've been to three different doctors who all do the same kinds of tests and insist nothing is wrong with me--or at least that I don't have lymphoma, which is my primary concern. But these persistently swollen and shotty lymph nodes cause me excessive anxiety to the point that I cannot sleep or function normally--I think I may
even be getting depressed, something I've never experienced. I keep reading about individuals who died from lymphoma after biopsies came back negative, and it scares me to death.

MAIN QUESTION: One doctor told me that sometimes someone who has been exposed to a prolonged infection--such as my scalp infection, or the
six-month bout with mono I had in college--may experience permanent
swelling in the lymph nodes, almost as if they're "scarred." I have
Googled and Googled, but can find nothing about such occurrences, so I
felt that he was just trying to calm me down and assure me, when in
fact he wasn't sure what was going on with my lymph nodes. I still
have strong concerns about cancer or else an immune disorer. If anyone can either back up, refute, or otherwise discuss this assertion about
"permanently" swollen lymph nodes, that would greatly help me decide
whether I should seek a FOURTH physician's opinion.

Thank you so very much for any help or advice. My anxiety levels (and my out-of-pocket doctor bills) are at record highs.

 
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Old 01-08-2006, 02:07 AM   #2
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Merimac HB User
Re: "Permanently" Swollen Lymph Nodes?

Quote:
Originally Posted by mz_barnacle
ANY help at all I will appreciate greatly.

BACKGROUND AND SYMPTOMS:
I have had shotty swollen lymph nodes down the side/back of my neck,
behind my ears, on the back of my head, and in my groin for over two
years (or, at least I've been aware of them for over two years). When I first detected them, I had concerns about lymphomas/leukemia so I
underwent several fine needle aspiration biopsies, blood tests
including CBC and liver-fucntion, chest x-rays, an HIV test, and a TB
test, but everything always came back normal. They did discover at
one point that I had a staff infection in my scalp, which we treated
with antibiotics, but it recurs from time to time. I also have facial acne and body acne.

A year and a half after all of these tests, after three rounds of antibiotics, the lymph nodes are just as swollen, I've been to three different doctors who all do the same kinds of tests and insist nothing is wrong with me--or at least that I don't have lymphoma, which is my primary concern. But these persistently swollen and shotty lymph nodes cause me excessive anxiety to the point that I cannot sleep or function normally--I think I may
even be getting depressed, something I've never experienced. I keep reading about individuals who died from lymphoma after biopsies came back negative, and it scares me to death.

MAIN QUESTION: One doctor told me that sometimes someone who has been exposed to a prolonged infection--such as my scalp infection, or the
six-month bout with mono I had in college--may experience permanent
swelling in the lymph nodes, almost as if they're "scarred." I have
Googled and Googled, but can find nothing about such occurrences, so I
felt that he was just trying to calm me down and assure me, when in
fact he wasn't sure what was going on with my lymph nodes. I still
have strong concerns about cancer or else an immune disorer. If anyone can either back up, refute, or otherwise discuss this assertion about
"permanently" swollen lymph nodes, that would greatly help me decide
whether I should seek a FOURTH physician's opinion.

Thank you so very much for any help or advice. My anxiety levels (and my out-of-pocket doctor bills) are at record highs.
Your concerns appear to have spilled over into an obsession about disease and dying which can happen when it is around us all the time.
But, the doctor is telling you the truth as the medical field knows it to be at this time. Exposure to testing is putting you at more risk than the swollen lymph nodes are. It sounds like the nodes are doing the job they are supposed to do in that they capture the infection and isolate it from the rest of the body so you do not get sick. If this concern does not diminish you might want to contact a psychologist to work on stress issues.

 
Old 01-08-2006, 12:12 PM   #3
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cutigergirl HB User
Re: "Permanently" Swollen Lymph Nodes?

I worry about this too all the time! I have a small olive sized node on each side of my neck-in exactly the same place on both sides. Above each of those, I can feel a small, pea sized node. They have been there for at least 5 years. They are pretty squishy and very movable. They worry me a TON though! My doc says since they are bilateral, the same size on both sides, movable, etc..that they are fine(enlarged due to past infections), but to keep an eye in case they get larger. As a child I had mumps, 14 strep infections, 10 ear infections, 2 bouts of pneumonia, etc..Ive always been sickly and had my tonsils removed due to them being permanently infected. I have lost about 7 lbs in April (none since), doc says this is due to the food poison I had and immense stress Ive been under all year. Haven't had any other "symptoms" so to speak. I always worry about this being lymphoma and it is also impacting my life to worry so much. Does anyone think this sounds like lymphoma?

 
Old 01-08-2006, 04:30 PM   #4
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SupraMan HB User
Re: "Permanently" Swollen Lymph Nodes?

I know exactly what you mean.

I tried to do some research online, but almost all these medical websites don't say anything about 'permanent' enlarged lymph nodes.

However, a lot of my friends along with myself, have palpable lymph nodes that have been around that same size for years and y ears.. So yea, I really don't know whats going on.

 
Old 01-08-2006, 07:55 PM   #5
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mz_barnacle HB User
Wink Re: "Permanently" Swollen Lymph Nodes?

Thank you so much for all your replies.

One thing I've been told is that despite common "knowledge" to the contrary, you don't have to have an infection for your lymph nodes to react. Any experiences with this? Some sources cite everything from allergies to acne to pms to dehydration for possible causes of or contributors to swollen lymph nodes. I DO know that constantly poking and prodding at the poor things--a habit of which i am guilty--certainly doesn't help the swelling go down.

I just reread the email I got from (one of) my old doctors that mentions something called "benign granuloma." What is that?

Re: my anxiety and stress/obsesssion (mentioned in the first reply)--I know that a lot of my problems come from stress and anxiety. Two years ago I started having panic attacks that were so bad I would pace at night, crying until I threw up, throwing up until I had the dry heaves... eventually I lost almost 10 pounds (and was already skinny), which made my glands more palpable, which made me more anxious...vicious cycle. I know I sound defensive, but I really feel taht getting reassured about my health will be the best treatment for my anxiety. Part of my problem--both for my anxiety AND why I've been to three doctors throughout all this--is that when all this started I had just gradtuated from college and moved across the country, broke off an engagment, started grad school, started teaching...which meant I had no decent health insurance, and no primary care physician. Now I'm done with grad school and just want a doctor who knows me and listens to her patients.

Thank you again for all of your help. I've never posted to this kind of discussion board before, and wasn't expecting such quick answers.

 
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