Long term swollen glands in neck area

[PGB]

I first saw my doctor in April with swollen glands in my neck I have seen him 3 times since, today being the most recient.  The swollen glands NEVER go down.  They don't always hurt but it is getting more frequent and severe.  My doctor said today that we would try one more antibiotic and steroid pack for 1 week and for me to return for a follow-up that if the "KNOTS" are still there in one week he wants to do a scan.  I asked him what he would be looking for and he said possible malignancies or to see if it is sinus related.  But he did blood work today and said it looked good at 12,000.  I had a low grade fever.  Wouldn't any of this have shown up in my blood work?  He said he doesn't think there is anything for me to worry about, but I am freeking out!  I am scared to death!  Tell me about this, what we are looking for and if it isn't cancer and is sinus related, what then?  And if it is cancer, what then?

[PGB]

I just don't feel good.  I am always tired and run down.  I have been wondering if maybe I need a B12 shot or something.  I really don't know what any other symptoms are, so I don't know if I have any.  I have been having trouble sleeping for a while though.  I wake up drenched in sweat.  My clothes are literally so wet that I have to get up and change clothes.  Don't know if this is realated or not.  I just now thought about it.  Didn't say anything to my doctor about it.  Sometimes it's hard to know what is just part of life and what is a symptom of something serious, you know?

[DMattson]

Yes, the fatigue and night sweats could be a symptom of what may be wrong. Please let your doctor know that you are experiencing these. If you are also loosing weight without trying to you need to let the doctor know.

[crystaly]

I certainly agree with the last comments go back and see your Dr. Night sweats are significant when you have a swollen gland especially if you have any weight loss. Chris

[PGB]

I am supposed to go back to doctor Friday so I will be sure to mention it to him then.  I am a 33 year old female and my period has been irregular for what seems like forever.  I just kind of hoped maybe I might be trying to strart the change REALLY early.  Wishful thinking I suppose.  Maybe it's all sinus related though because I do have facial pain on the left side (same side the knots are) under my eye and this morning when I got up my eyes had a little bit of drainage dried on them.  Is this wishful thinking?

[DMattson]

If I were you I would request a biopsy of one of the enlarged glands. This will rule out any type of lymphoma. The symptoms you are experiencing CAN be syptoms of this disease. It may not be. It is best to rule it out. If you have been loosing weight without trying to you must let your doctor know about this as well. Let us know what happens. Take care.

[ozark]

have you had your thyroid checked out?

[PGB]

It was checked about a year ago and the first test was abnormal, can't remember if it was high or low, but when I went back and repeated the test everything was fine.  But, like I said that was a year ago.  They took 2 tubes of blood last Friday when I went in and it usually takes about a week and a half to get the results.  Guess I'll know something on all that next week sometime.

[Lfrankl]

I too have been having some of the same type problems.  It all started about a year ago after having my first son.  I have always had irregular periods, etc.  I developed a sore throat I took Augmentin and about a week later had to go to ER with terrible abdominal pain.  Doc took blood, had ultrasound on gallbladder-everything normal.  Symptoms have just sort of added up since then.  Digestive problems, high blood pressure, rapid heart rate (sometimes, night sweats (only occasional), reccuring sore throats, sore stiff neck, always tired and worn out feeling, recently noticed hard sore lump behind right ear-lymph node maybe?  I am tired and what to know what is wrong.  I have had blood work done 5 times over past year.  I get up in the morning and just feel like I have been run over by a truck. Wouldn't someone notice an elavated white count, etc?  I am starting to get really worried.  I am thinking it is my hormones--MAYBE!  Anyone any ideas?

[ozark]

the other thought is mono....have either of you had it checked out?

[PGB]

Okay.  Saw doctor again today.  Mono test WAS done last week and it was neg.  After discussing the night sweats and other symptoms that I didn't realize were symptoms of anything now he thinks it might be chronic fatigue syndrome.  Anyone heard of this?  What is it?  How is it detected?  They are doing more blood work, should know something the first part of next week.  How is it treated?  Thanks!!

[PGB]

Haven't been checked for mono.  But my glands have been swollen and painful for 3 monthes now.  If I had mono, wouldn't my husband also have it by now?  I mean, 3 monthes is a long time for someone not to pass it on to their spouse isn't it?  I go back to doctor today, he said  last week if they were still swollen today that he wanted to do a scan.  They are still swollen.  And hurting like the devil this morning.  Been up since 3 am in fact.  Maybe we'll find something out soon.

[PGB]

My problems with my period have always been there but got worse after a tubal pregnacy about a year and a half ago.  Looks like if all our problems were hormone related they could give us a pill to level our hormones out and be done with it, doesn't it?  Good Lord knows they are quick to give out pills for every thing else!  I haven't had any weight loss yet.  Matter of fact, I have actually gained about 10 pounds this summer because I have been sick all summer and just stayed home laying on the couch with the heating pad on my neck and ear.  I am usually pretty active but not for the past several monthes and you can look at me and tell.  My kids don't understand why mom doesn't feel like going anywhere or doing anything any more.  For that matter, neither does my husband.  I just want to feel good again.  I want to get a good nigh's sleep without waking up 3 or 4 times not able to get back to sleep or covered in sweat.  I am sick and tired of being sick and tired all the time!!!  And I am sure you feel the same way.  Keep me posted on what you find out about your condition.  Take care!

[Lfrankl]

I am also so tired of not feeling good.  My main concerns are the extreme fatigue, soreness in the mornings in the neck, shoulders, underarms, elbows and ankles.  The swollen lymph nodes also concern me alot.  I have poked at them so much I don't know if they are swollen anymore or just enlarged from me picking at them.  I have a friend whose father was diagnosed with luekemia recently.  I have a lot of the same symptoms that he had which really worries me.  I am only 24 and have a 17 month old.  I am not ready for a terrible disease such as cancer.  The past few days I have noticed that my vision is blurry like.  I keep thinking maybe it is a migrain?  I also have been loosing a lot of hair.  Do you have this problem?  i thought, "This has to be hormonal."  But then my friend told me that her father also lost his hair before he was diagnosed with luekemia.  I am going to the doctor this evening and I am not leaving until she finds out what is wrong with me!  I'll let u know.

[PGB]

I tested positive for Epstein-Barr Virus.  Also had a CT done.   Am still waiting for results of that one.  What did you find out?  I do have a lot of trouble with hair loss, but I have since the birth of my first son, 9 years ago.  I have found that the longer my hair is, the more it falls out.  And, believe it or not, the longer it is, the worse my migraine headaches are.  Don't know what the connections are, and really don't question it, just whatever works, you know?  I have been on the med. for the virus for 3 days now and am still having pain in my gland under my left ear.  It is still swollen and it HURTS!!!  My doctor is beginning to make me feel like he thinks it is all in my head, though.  Heck, I don't know, maybe it is.  Maybe I am loosing my mind.  All this worrying and wondering can't help any though.  Well, let me know what you find out.

[Lfrankl]

Oh my Gosh!  I also tested positive for Epstein Barr.  Everything else in my blood work was fine.  The MRI on my brain was fine (no Multiple Sclerosis) and the ultrasound on my thyroid was fine. My white count was fine too.  Sounds like we have the exact same thing.  I tested NEGATIVE for mono.  I asked her if maybe I did have mono months ago when all this started and she said that it was possible.  My niece had mono back in February and I ate after her about 4 weeks before she came down with it.  All of my symptoms started about a month after that.  I went to my family doc and told him about my niece.  He NEVER tested me.  It was his Nurse Practicioner that finally found out what is wrong with me. Needless to say I won't be using him anymore. She told me that I could just look up the causes of Epstein Barr on the internet.  I read that there is some association with Hodgkin's disease.  That is kinda scarry since I have so many swollen lymph nodes.  I also read that some doctors believe that if u have symptoms 6 months or longer it is Chronic Fatigue Syndrome.  In other words some docs believe that Epstein Barr causes CFS.  I think that is probably what I have.  What did your doctor give u for medicine?  She told me to take a multi-vitamin and get all the rest that I can.---Lisa

[Lfrankl]

Hey, I was going to ask you...Do u have any swollen lymph nodes right above your collar bone?  Also, do you sometimes have a dull ach right under your jaw around behind your ears? I have also had some blurry vision for about a week now too. Oh and one more thing...my eyelids are puffy.

Lisa :-)

[PGB]

Sounds the same to me too!!  My ct came back ok yesterday also.  My doctor gave me Famvir 500mg 3 times a day for 7 days.  He also told me yesterday that I should take the med. 1 wk. (today will be a week) and wait another week and come back to repeat blood work to make sure that it is better.  If not, then he will refer me to ENT.  So,........Makes me feel better to know someone else is going through this to.

[Lfrankl]

Yeah it is kinda comforting to know that someone else is going through the exact same thing.  Good luck to you and keep me posted on how you are feeling.  I will do the same.

Lisa

[PGB]

Well, took the last of my med. tonight, so let's sit back and wait!  What else is new?  The glands on the left side of my neck are the only ones that are swollen and they do seem to have gone down a little bit.  Maybe.  My doctor told me that I have all of the classic symptoms of Chronic Fatigue Syndrome and that he feels that it is all feeding off of each other.  The gland right below my left ear is swollen enough that the edge of it is pressing against my jaw.  Right in the joint.  It hurts really bad.  But I guess everybody's getting tired of hearing me complain about it hurting because the doctor just looks at me like I'm crazy when I say anything about it.  Like it doesn't hurt or something.  I'm about about of patience.  I didn't have much to start with.  Take care and I hope you feel better soon.  This is the pits!  And especially trying to drag yourself to work feeling like this!

Pam

[JHawk]

I have been experiencing swollen glands in my neck, an achy throat and over all feeling poorly for about twelve months. I have been to my GP several times, an ENT three times. I've had blood draws and X-rays of my neck and chest. They can find nothing. Like you the Dr.'s make me feel like it is all in my head. I have felt bad for so long that I can't remember when I felt good. I have to take a Tylenol PM to sleep through the night. I know how frustrated you are. I am afraid that I might have something seriously wrong, but can't seem to find a Dr. who can help me.

[PGB]

Did they test for Epstein-Barr?  I had never heard of it until I was tested positive for it.  It is my understanding you can have it and not know it and it doesn't show up in just any test.  They have to be testing for it specifically.  Or what about Chronic Fatigue Syndrome?

[Jewelloyd]

Wow!  Some of these symptoms feels so similar!!  I had 3 cases of strep in Feb., which was strange for me since I hadn't had strep since 4th grade.  Since then, my lymph nodes have stayed inflamed.  I never thought too much about it until 3 weeks ago, when they started to hurt again and swell even larger.  Then, over a weekend, the left side of my neck and back of my shoulder also became swollen.  Concerned, I went to an after hours dr.  He tested me for strep, mono, and my thyroid...all tests came back negative and my white count and everything else was normal.  Well my mom is a nurse practioner and started wondering if this could be lymphoma.  I am soooooo tired all of the time.  I don't remember the last time I wasn't tired.  It feels like I can barely make it through the day.  I am just existing at this point.  My lymph node is still swollen...it went down a little bit but today it is bothering me again, and the side of my neck is swelling.  I had a CT scan and it came back saying my lymph nodes are enlarged but nothing abnormal.  The ENT I went to basically wrote me off. He didn't even check any other lymph nodes on my body except for my neck.  So now my mom is convinced it is nothing.  I am not sure what it is except I can't live like this!!  I've also been running a 101, 102 fever for a few days.  They're making me wonder if this is all in my head.  Should I seek a second opinion or wait it out to see if the symptoms get better?  I just feel basically "out of it"  almost like I've been drinking paired with extreme fatigue

[PGB]

Obviously we don't know what we are dealing with in our own cases so we sure couldn't tell you what to do.  But if the doctor you saw wasn't one you use regularly and you don't trust him, maybe you should see your regular doctor.  Sorry not more help.  Hope everything works out for you.

[Lfrankl]

Hummm...Sounds like you guys might have the same thing.  I don't know how old all of you are, but I am only 24.  So, I know that I shouldn't be feeling like this.  Like Pam said, you have to be tested specifically for Epstein Barr.  I tested NEGATIVE for mono as did Pam.  Although, it is the virus that causes mono. I have good days and bad days.  I have noticed that by taking a multi-vitamin and an 800 mg Ibuprofen every morning seems to help.  I also try to get as much rest as possible. Although, that is easier said than done since I work part time, I am in college, married, and have a 17 month old son.  I woke up this morning and it feels like it is starting all over again.  I also have a couple of new symptoms.  I have been having a "twitching" like sound in my right ear drum for some months now.  I think it might be due to the swollen lymph node right at the end of the bone behind my ear.  Now, for about 3 days, my bottom lip has been twitching.  It's about to drive me NUTS!!!  I looked up to see if there are any associations with CFS and there is.  That has got to be what I have.  Good luck to everyone.  Pam, did the meds help you?

Lisa