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Old 12-03-2003, 07:14 PM   #1
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Problems with recurrent swollen neck nodes

I have been posting mostly in the lymphoma board for the past year trying to find answers to my illness. I have had CT scans, numerous blood work, lymph node biopsies and over the year has tried various antibiotic treatment. In addition to that I have seen my GP, ENT, internist, rheumatologist, oncologist and now I am being sent to an infectious disease specialist. My ENT wants me to see this doc as well as full body ct scan. She also wants me to get an ACE test(not too sure why). The biopsies I had last year came back clear, and very close to the surgical site I developed even more swollen nodes. I suffer from fatigue, dizziness, brain fog, a darkening of vision at times.. blurred as well. I get occasional headaches, joint pain, frequent chills or sweats. Lastly for the past 7 yrs since my c-section I've had a pretty intense pain in my left pelvis. Sometimes it feels like I'm being stabbed with needles and sometimes it's so bad it's hard to even stand up. I'm not sure if that's related because I didn't feel sick like this until Aug of 2002 and the side pain has been on-going for much longer.

Does this sound like something viral or resemble any systemic disease related or non to infection???

Thanks,

Bella

 
Old 12-08-2003, 12:47 PM   #2
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Re: Problems with recurrent swollen neck nodes

Bella:

Just a shot in the dark, but some of your symptoms sound like my daughter (13) was came down with mono exactly a year ago. She did have a sore throat, but not where a sore throat normally occurs - it was deep down in the neck. Eventually, through tons of tests and doctors, it was determined that she had indeed ("at some point") contracted the Epstein-Barr virus (EBV) which causes mono. She missed five straight months of school last year and has already missed a total of 13 days this year. Exercise seems to trigger a lot of the problems for her (she's a competing gymnast, when she can be). Many of her ongoing and ever-changing symptoms resemble yours (problems with lymph nodes and glandular fever, etc.) Do some research on long-term EBV (which can develop into chronic fatique syndrome) and read a lot of the posts on the forum under "Chronic Fatique". If that sounds like you, I would suggest going to see an infectious disease doctor.

Good luck!

ozarkheaven

 
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Old 12-08-2003, 05:40 PM   #3
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Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by ozarkheaven
Bella:

Just a shot in the dark, but some of your symptoms sound like my daughter (13) was came down with mono exactly a year ago. She did have a sore throat, but not where a sore throat normally occurs - it was deep down in the neck. Eventually, through tons of tests and doctors, it was determined that she had indeed ("at some point") contracted the Epstein-Barr virus (EBV) which causes mono. She missed five straight months of school last year and has already missed a total of 13 days this year. Exercise seems to trigger a lot of the problems for her (she's a competing gymnast, when she can be). Many of her ongoing and ever-changing symptoms resemble yours (problems with lymph nodes and glandular fever, etc.) Do some research on long-term EBV (which can develop into chronic fatique syndrome) and read a lot of the posts on the forum under "Chronic Fatique". If that sounds like you, I would suggest going to see an infectious disease doctor.

Good luck!

ozarkheaven


Ozark,

Sorry to hear about your daughter, I hope she's feeling better. I've actually had mono before about 9 yrs ago, and it's NO fun at all. I was tested for EBV through my Rheumy and it came up negative. I'm going to make an appointment soon with the Infectious disease specialist that my ENT recommeded. I guess I'm just tired of seeing doctors and being that I have a disabled child I have very little free time to make these appointments and to take tests. I appreciate you trying to figure out my symptoms though.

Take care,
Bella

 
Old 12-09-2003, 01:49 PM   #4
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Re: Problems with recurrent swollen neck nodes

bellah, the pain in the pelvic area suggests PID (pelvic inflamatory disease.

their is a wide variety of substances that causes enlarged lymph nodes, mono,Hodgkins disease, TB, actinomycoses, strep throat.

It is hard for me to imagine why all the specialists that have examined youm but didn't come up with a diagnosis.the best specimen to examine is another lymph node. tissue sections should be examined by a pathologist, including special stains for bacteria, fungi and mycobacteria, the type of cells and how they are arranged (granlomas ?). part of the lymph node shoukd be submitted for fungus, mycobacteria and and bacterial cultures and slides.

I had a friend who was a patient in the hospital where i worked, i visited him every day and he was becoming impatient because of the lack of a correct diagnosis. all of his doctors were treating a non existent infection. I checked his lab work and their was no indication of an infection,

Finally, he dismissed himself and went to a larger hospital. the doctor biopsed a lymph node and the diagnosis was confirmed as Hodgkin's disease, if he stayed under the care of the first doctors, he would be dead. He was in the 3rd stage of the disease and now is completely cured,

bruce

 
Old 12-09-2003, 06:42 PM   #5
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Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by Bruce
bellah, the pain in the pelvic area suggests PID (pelvic inflamatory disease.

their is a wide variety of substances that causes enlarged lymph nodes, mono,Hodgkins disease, TB, actinomycoses, strep throat.

It is hard for me to imagine why all the specialists that have examined youm but didn't come up with a diagnosis.the best specimen to examine is another lymph node. tissue sections should be examined by a pathologist, including special stains for bacteria, fungi and mycobacteria, the type of cells and how they are arranged (granlomas ?). part of the lymph node shoukd be submitted for fungus, mycobacteria and and bacterial cultures and slides.

I had a friend who was a patient in the hospital where i worked, i visited him every day and he was becoming impatient because of the lack of a correct diagnosis. all of his doctors were treating a non existent infection. I checked his lab work and their was no indication of an infection,

Finally, he dismissed himself and went to a larger hospital. the doctor biopsed a lymph node and the diagnosis was confirmed as Hodgkin's disease, if he stayed under the care of the first doctors, he would be dead. He was in the 3rd stage of the disease and now is completely cured,

bruce


Bruce,

I'm feeling much like your friend now. I know something is very wrong, but I just don't know what it is. My ENT (who performed the biopsy surgery) did in fact send out the tissue for all of the cultures and tests that you mentioned(Nov 2002). She showed me a report where it said that the tissue was benign and all the other tests came back negative. She continues to refer me to one specialist after the other and jokingly calls me "the lumpy girl". I just don't feel like she even knows what she's doing. The last appointment just upset me badly when she couldn't find the lymph node that showed on the CT scan. There is a university hospital close by... I might just end it here and go to them instead. All i want is to find out what is wrong and to move on with my life.

Thanks for your great advice and comments

Bella

 
Old 12-11-2003, 01:42 PM   #6
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Re: Problems with recurrent swollen neck nodes

bellla, i would suggest the university med center. i have parkinsons and i went through five neurologists before ending up at a med center.

one problem is getting an appointment.

bruce

 
Old 12-11-2003, 06:03 PM   #7
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Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by Bruce
bellla, i would suggest the university med center. i have parkinsons and i went through five neurologists before ending up at a med center.

one problem is getting an appointment.

bruce

Bruce,

I know what you mean about having a hard time getting an appointment. My son is Autistic and he used to have a neuro out of UIC and he'd have to wait months in advance. I have Loyola close by so I might just try there.

Just curious though, Did your friend know why they thought it was an infection as opposed to being lymphoma?? I myself have lymph nodes that change in size and my doctor told me that it's not typical of lymphoma. Instead only get bigger and remain in certain areas. I've never been admitted to the hospital except for my biopsy surgery. What was the reason he was admitted??

Lisa

 
Old 12-12-2003, 09:24 AM   #8
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Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by bella67
Bruce,

I know what you mean about having a hard time getting an appointment. My son is Autistic and he used to have a neuro out of UIC and he'd have to wait months in advance. I have Loyola close by so I might just try there.

Just curious though, Did your friend know why they thought it was an infection as opposed to being lymphoma?? I myself have lymph nodes that change in size and my doctor told me that it's not typical of lymphoma. Instead only get bigger and remain in certain areas. I've never been admitted to the hospital except for my biopsy surgery. What was the reason he was admitted??

Lisa

My friend had probably the worst doctors available, and it was obvious they were all guessing at his diagnosis. the only symptom that i was aware of was an
"elavated" temp. of slightly over 99 degrees. so they decided to treat him with a broad spectrum antibiotic that they assumed the had everything covered. we did a large number of blood cultures on him, and naturally they were all negative, because the cultures should have been done before giving him antibiotics. it never occurred to them to do a biopsy which would have shown he had Hodgkin's disease. 99 degrees wasn't even a significant temp.

Now you see why i suggested going to a university med center. their standards are higher and they could do more sophisticated tests.

bruce

 
Old 12-14-2003, 07:21 PM   #9
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Re: Problems with recurrent swollen neck nodes

I understand what you're saying, and it's too bad that we have to be so pro-active about our own healthcare. I don't mind doing so as long as the doctors are upfront with me and doesn't take offense if you get a second opinion. My mom had this oncologist she went to years ago that she asked some questions about my problems. Turned out my ENT was a student of his years ago. The day before my biopsy surgery I casually mentioned this to her and you would have thought i blackballed her from the entire medical community.. lol I mean he had nice things to say about her and she said "are you checking up on me??!!" She's a nice doctor but wishy washy as well. One minute she's sounding so serious , making it seem like there's no time to waste, the next she's acting like I'm paranoid or not knowing what i'm talking about. I'm no doctor BUT i do enjoy reading about medicine. I find it very fascinating and at one point wanted to study to be a pediatrician. All i know is that i had three lymph nodes removed with no answers whatsoever, and about 6 months later they reappeared in the same exact spot (maybe a few inches over). Something is definitely draining and the nodes aren't that small, so something is up.

Thanks for taking the time to converse about this, I read in another post you have trouble with your hands from your parkinson's. My grandfather had horrible shakes from tremors he aquired during the war. That's not an easy thing to deal with.

Take care,

Bella







Quote:
Originally Posted by Bruce
My friend had probably the worst doctors available, and it was obvious they were all guessing at his diagnosis. the only symptom that i was aware of was an
"elavated" temp. of slightly over 99 degrees. so they decided to treat him with a broad spectrum antibiotic that they assumed the had everything covered. we did a large number of blood cultures on him, and naturally they were all negative, because the cultures should have been done before giving him antibiotics. it never occurred to them to do a biopsy which would have shown he had Hodgkin's disease. 99 degrees wasn't even a significant temp.

Now you see why i suggested going to a university med center. their standards are higher and they could do more sophisticated tests.

bruce

 
Old 12-15-2003, 01:03 PM   #10
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Bruce HB User
Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by bella67
I understand what you're saying, and it's too bad that we have to be so pro-active about our own healthcare. I don't mind doing so as long as the doctors are upfront with me and doesn't take offense if you get a second opinion. My mom had this oncologist she went to years ago that she asked some questions about my problems. Turned out my ENT was a student of his years ago. The day before my biopsy surgery I casually mentioned this to her and you would have thought i blackballed her from the entire medical community.. lol I mean he had nice things to say about her and she said "are you checking up on me??!!" She's a nice doctor but wishy washy as well. One minute she's sounding so serious , making it seem like there's no time to waste, the next she's acting like I'm paranoid or not knowing what i'm talking about. I'm no doctor BUT i do enjoy reading about medicine. I find it very fascinating and at one point wanted to study to be a pediatrician. All i know is that i had three lymph nodes removed with no answers whatsoever, and about 6 months later they reappeared in the same exact spot (maybe a few inches over). Something is definitely draining and the nodes aren't that small, so something is up.

Thanks for taking the time to converse about this, I read in another post you have trouble with your hands from your parkinson's. My grandfather had horrible shakes from tremors he aquired during the war. That's not an easy thing to deal with.

Take care,

Bella

bellla, i am never comfortable talking about my own medical prpblems.

don't give up on having the lymph nodes checked, because if they are inlarged that is an important symptom. the lynpd nodes are an important part of your immune systems and they filter out foreign bodies, they inlarge because the lymphoid tissue is stimulated to produce more cells. it should never be ignored.

bruce

 
Old 12-24-2003, 06:28 PM   #11
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trac HB User
Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by bella67
I have been posting mostly in the lymphoma board for the past year trying to find answers to my illness. I have had CT scans, numerous blood work, lymph node biopsies and over the year has tried various antibiotic treatment. In addition to that I have seen my GP, ENT, internist, rheumatologist, oncologist and now I am being sent to an infectious disease specialist. My ENT wants me to see this doc as well as full body ct scan. She also wants me to get an ACE test(not too sure why). The biopsies I had last year came back clear, and very close to the surgical site I developed even more swollen nodes. I suffer from fatigue, dizziness, brain fog, a darkening of vision at times.. blurred as well. I get occasional headaches, joint pain, frequent chills or sweats. Lastly for the past 7 yrs since my c-section I've had a pretty intense pain in my left pelvis. Sometimes it feels like I'm being stabbed with needles and sometimes it's so bad it's hard to even stand up. I'm not sure if that's related because I didn't feel sick like this until Aug of 2002 and the side pain has been on-going for much longer.

Does this sound like something viral or resemble any systemic disease related or non to infection???

Thanks,

Bella
hiya. my daughter who's ten is having the exact same symptoms.
she's just been referred to a specialist. i too am having similar symptoms but with chest pain that is really bad. i was diagnosed with glandular fever 3 months
ago but my daughters' blood tests came back negative. maybe the test was done too early. think i read on the internet it takes about 10 days for glandular fever to show in blood. good luck and try not to worry. probably got the same as us, esspecially if biopsies were clear.

 
Old 01-04-2004, 06:01 PM   #12
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Re: Problems with recurrent swollen neck nodes

Hi Trac,

Sorry to hear about you and your daughters health problems. I haven't been able to post in the past few weeks since my keyboard broke on my laptop I have no clue what is wrong with me, but I do know it's certainly not glandular fever. I've had this for over a year and a half and the symptoms seem to be come more severe and mysterious. Just the other day I had a 101 fever out of the blue and the next three days I just felt horrible. Prior to that I had some swollen nodes in my neck that were a bit sore but then disappeared the following day. I haven't even been able to eat since my stomach has been giving me problems. A recent concern is waking up every morning with pain in my kidneys. I know it's not general back pain since I suffer from arthritis in my lower spine and know how the pain differs. This is like an aching deep in my back and after I urinate maybe an hour later the pain is totally gone. I have no pain when I urinate, nor do I have any blood in my urine. I looked up the symptom and of course it has to say "typically caused from a tumor near the spine". Ugghhh, I'm just so tired of not knowing what is wrong with me and really needing to be healthy to take care of my children. I'm basically a single parent so to speak. I'm married, but my husband takes no part in raising the kids and refuses to let me rest if I'm ill. So, the other nite with a fever, dizziness and extreme weakness I just had to continue on with things that needed to be done around the house. I'm hoping now that the holidays are over I'll get those tests done that the doc ordered like 3 months ago!! lol

Thanks for the advice though,

Bella

 
Old 01-04-2004, 06:25 PM   #13
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Bruce HB User
Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by bella67
Hi Trac,

Sorry to hear about you and your daughters health problems. I haven't been able to post in the past few weeks since my keyboard broke on my laptop I have no clue what is wrong with me, but I do know it's certainly not glandular fever. I've had this for over a year and a half and the symptoms seem to be come more severe and mysterious. Just the other day I had a 101 fever out of the blue and the next three days I just felt horrible. Prior to that I had some swollen nodes in my neck that were a bit sore but then disappeared the following day. I haven't even been able to eat since my stomach has been giving me problems. A recent concern is waking up every morning with pain in my kidneys. I know it's not general back pain since I suffer from arthritis in my lower spine and know how the pain differs. This is like an aching deep in my back and after I urinate maybe an hour later the pain is totally gone. I have no pain when I urinate, nor do I have any blood in my urine. I looked up the symptom and of course it has to say "typically caused from a tumor near the spine". Ugghhh, I'm just so tired of not knowing what is wrong with me and really needing to be healthy to take care of my children. I'm basically a single parent so to speak. I'm married, but my husband takes no part in raising the kids and refuses to let me rest if I'm ill. So, the other nite with a fever, dizziness and extreme weakness I just had to continue on with things that needed to be done around the house. I'm hoping now that the holidays are over I'll get those tests done that the doc ordered like 3 months ago!! lol

Thanks for the advice though,

Bella

Bella, about the only thing i can think of is to have 3-4 blood cultures drawn. Anything ekse would be a guess.

bruce

 
Old 01-05-2004, 05:54 PM   #14
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Re: Problems with recurrent swollen neck nodes

Hi Bruce,

Hope you are doing well and had a good holiday!! I'd ask you which cultures you'd draw, but I don't think that would help me. I think I'd "possibly" offend my doc if I told her which ones to order.. lol Last time I tried doing that she looked at me as if i were an alien

Keep ya posted, and thanks again... Bella







Quote:
Originally Posted by Bruce
Bella, about the only thing i can think of is to have 3-4 blood cultures drawn. Anything ekse would be a guess.

bruce

 
Old 01-06-2004, 04:22 PM   #15
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Bruce HB User
Re: Problems with recurrent swollen neck nodes

Quote:
Originally Posted by bella67
Hi Bruce,

Hope you are doing well and had a good holiday!! I'd ask you which cultures you'd draw, but I don't think that would help me. I think I'd "possibly" offend my doc if I told her which ones to order.. lol Last time I tried doing that she looked at me as if i were an alien

Keep ya posted, and thanks again... Bella

Bella, you are right. doctors have huge egos, especially the garden variety types. please keep me posted.

winter suddenly showed up, minus 13 degrees windchill.

bruce

 
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