Large Swollen Lymph Nodes in Neck--Your experiences (this is a bit long)

[cvjw]

Sounds just like what happened with a friends daughter. After almost a year of tests, it turned out to be Lyme disease. If it had been diagnosed earlier, the symptoms could have been better controlled.

 

[prprincess]

Oh boy do I have experience with swollen lymph nodes! Scary, but I agree with most of the other posters here that other tests should be done, because they may just be reactive. Pay close attention to all of her symptoms, and don't stop until you get answers!

I had my thyroid removed back in 2010 and it's common for the cancer to spread to the lymph nodes, even though I was treated with radioactive iodine. So when my lymph nodes became enlarged in 2012 we all freaked out. My doctor started to test me every six month, and then every three months. At that same time I started developing chronic sinusitis, and was falling ill with a sinus infection at least once a month. I brought this up to my ENT to swore they were not related, but my Endocrinologist didn't think it hurt to check. We finally convinced my ENT to sign off on a CT scan of my sinuses, and lo and behold, my entire left sinus was severely infected. My endocrinologist predicted that my nodes would decrease in size after the surgery, we tested six months later, and lo and behold, she was right. But trust me, it was years of worrying!

Good luck!

 

[Christine]

My son had this a few years ago. It was mono. At first, the mono tests were negative when he was actively sick. But later he did test positive for it. He's had all kinds of illnesses but none that created those HUGH lymph node lumps on the back of his head. One doctor said that this is pretty common for mono.

 

[AnnaFloridaLover]

My son had this a few years ago. It was mono. At first, the mono tests were negative when he was actively sick. But later he did test positive for it. He's had all kinds of illnesses but none that created those HUGH lymph node lumps on the back of his head. One doctor said that this is pretty common for mono.

My daughter had mono in grade 7 and I was thinking the same thing. Mono doesn't always show up on tests.

 

[indimom]

My first thought was mono as well. I had it in college, EXTREME fatigue. Like nothing I'd ever experienced before or since. And the glands in my neck were sooooo swollen. It was terribly painful.
I also failed the first mono test, but the second test a week or so later came back positive.

 

[stsomewhere]

as for the fatigue, has she been checked for POTS/ dysautonomia? My daughter has it. It is a common but rarely known. It is estimated that 1 in 10 teens have it, mostly girls.

 

[Pink Partridge]

Thank you, everyone. I read each and every response. I will check back (hopefully on Friday) once the results are available.

 

[Cannot_Wait_4Disney]

I will preface this with my daughter will be getting an MRI next Thursday. I just need people to calm my nerves.

My daughter (high school junior) has been complaining of severe fatigue the past 9 months. It doesn't stop her from her activities, school work, or social life. But she is in bed at 9pm every night. I took her to doctor in March. Blood work (CBC/CMP/TSH) completely normal.

Fast forward to 2 weeks ago. She now has two lumps in her neck. It seems like they appeared overnight. They could have been there longer, but she just noticed them.

Doctor sent her for blood work again. Once again, normal. Then he sent her for ultrasound. Results are:


"Areas correspond with enlarged lymph nodes. Posterior to the angle of the mandible left side. Hypoechoic mass with vascularity measures 2.2 x 1.2 x 1.1 cm. Adjacent is a hypoechoic mass with central vascularity measuring 3.8 x 0.9 x 2.8 cm."

He said he now wants her to get an MRI, because these are very large lymph nodes. The word "mass" terrifies me. But, 3.8 cm doesn't seem very large to me.

She does have ear pain on left side as of 3 days ago. But no ear infection.

Of course, I am on Google non stop and what I see scares me. Why does everything say greater than 2cm could be lymphoma? So I am a mess. Next Thursday can't come soon enough. Any ideas? I am open to all opinions and stories.

Only online. I'm not going out in all that crazy mess.

Raise your right hand and repeat after me.

I
PINK PARTRIDGE
WILL NEVER
EVER
EVER
GOOGLE
SYMPTOMS
AGAIN.

I googled some common nerve symptoms and every last site on the first 5 pages was ALS!! ALS!! ALS!! Never mind ALS is rare. It's click bait. Same goes for your lymph node thing.

Do not get upset or scared until given a reason to do so with a confirmed diagnosis. There are a myriad things that can swell up lymph nodes and lymphoma is just one of them.

 

[lorilclevelandrn]

I recommend consulting an ENT if diagnostic studies and lab continue to test neg w/no resolution.

 

[dchi]

Just did a quick google and I saw that a side effect of the vitamin d 3 can cause fatigue.

 

[TipsyTraveler]

I had a chronically enlarged lymph node on one side of my neck for years, from sometime in my teens until I was 25. No matter if I was sick or healthy it never went down in size. I mentioned it to every doctor I went to and they all shrugged it off. When I was 25 I had my tonsils removed for unrelated reasons (or so I thought) and it went away. I've never had it swell up again in the decade+ since, so I guess that was the cause.

 

[Cogswel_Cogs]

You say two. Are they both on the same side. Wife had swollen lymph nodes. She went for MRI and Biopsy. Wound up not being cancer. I think doctors said if on opposite sides less likely to be issue. Not gurantee but rember few doctors mentioned that.

 

[Park Pirate]

Of course, I am on Google non stop and what I see scares me. Why does everything say greater than 2cm could be lymphoma? So I am a mess. Next Thursday can't come soon enough. Any ideas? I am open to all opinions and stories.

This sounds somewhat similar to what happened to me. This was over 25 years ago, so I may have some of the terminology or sequence mixed up.

I do not necessarily remember the fatigue - I was a freshman in college and was living on my own for the first time. So, I probably would not have recognized fatigue as a symptom if I had it - I would have just thought it was due to studying, going out late, etc.... Anyway, out of the blue I woke up with one or two really swollen lymph nodes in my neck. I felt fine, but I went to the infirmary and the doctor recommended more testing - enough that I flew home (lived about 4.5 hours away by car) and had a specialist look at it. I had the nodes (or one of them) removed for a biopsy. The initial section (cold-section?) looked 'suspicious' and it now seemed like it was either going to be Hodgkin’s or a more severe case of lymphoma. However, the biopsy was sent to the lab for a more definitive test. In the mean time, I was set-up for an immediate Scan (don't remember what type, but that the contrast agent tasted horrible). While I was having the scan, the lab sent word to my parents that the tests came up negative - it was not cancer. This all happened in the space of about 8 days (I ended up missing a week of classes).

My girlfriend's (now wife) father was a practicing ER doctor and the whole time said that it would seem odd to be cancer, since the lymph nodes enlarged seemingly overnight. He was right. I went on to have a few more tests for things like Epstein-Barr, but everything was negative. The Scan revealed that there had been some kind of 'event' but that everything seemed to be draining or going back to normal. I think they just called it 'shoddy-lymph'.

So, like others have said - don't rely on google and don't panic. It may just be some kind of virus/reaction and that is how her immune system is handling it. Perhaps it is just, 'shoddy-lymph'. Rest assured that you are doing the most that you can by having it checked out. Once you get information back, you will know what has to be done, if anything at all.

I know it is trying and you want answers right away. Hang in there and we will keep you in our thoughts and prayers.

 

[nkereina]

Also wondering whether she's been tested for mono. I contracted mono when I was 19 and my symptoms were not consistent with typical mono symptoms. I was tested multiple times for strep throat, had a rash, very large lymph nodes. Finally was tested for mono which is what it ended up being, but it was a good three weeks before they determined this. Ironically, I was never fatigued on mono but that's the typical symptom of it.

A friend of mine had large swollen lymph nodes and it ended up being a bacterial infection. She's still being treated for it and it could be as long as a year before she can stop any treatment/medication. Her symptoms included a fever though as well.

Good luck to you! I am also a worrier when it comes to stuff like this, so I understand what you're going through!

 

[design_mom]

I had something similar my sophomore year in high school. I was so tired and my lymph nodes were so swollen. I kept getting sent to the nurse's office because I looked like death warmed over, but the doctor's couldn't find anything wrong. They tested me for mono a couple of times, then decided it must be allergies. An allergist prescribed meds and said I was allergic to trees. I eventually got better, I'd never had an allergy season like that before nor since. With all this talk about about false negatives for mono, I wonder if that's what it was.

 

[pigletto]

I'd say mono as well. My brother had it so bad he lost a semester of university. My husband had it when we were dating and I remember him being so tired he cried. He would go to school and to bed.. over and over for months.
He went to the doctor and they put him on antibiotics and he broke out from head to toe in a pinprick rash.. that was the definite sign that it was mono. By that point he'd had it for weeks. It took another few months of taking it really easy and sleeping a lot for him to feel better.

 

[Pink Partridge]

UPDATE:

First of all, thank you again to everyone who responded. You were all a wonderful help to me, as I was very anxious about this.

So, guess what is causing the swollen glands?

Impacted wisdom teeth!

Her salivary glands are also swollen. Also, I didn't mention that I thought she had pink eye last month, but the doctor said it was not pink eye. Her eye has been oozing on and off. This is all due to her wisdom teeth. Doctor said even the tiredness is attributed to these teeth. Think of a teething, cranky baby.

We meet with an oral surgeon next week. Can't believe that teeth can cause so much trouble

But I am so thankful for the easy fix. Thank you all again.