Ebv lymph nodes
Hi, I’m 25 and got diagnosed with mono about 8 months ago. I have multiple lymph nodes in my neck that are enlarged and throbbing. They aren’t getting any worse but aren’t getting any better. It feels like they just stay at the same size and never go down. I feel like my energy is down a bit but I have no other symptoms. No headaches or muscle pains or anything. I sleep perfectly fine. But they been enlarged and throbbing for 8 months. They were huge when I first got mono and went down a bit after I got over the acute symptoms of mono . But then it feels like I hit a wall and they stay the same size. My primary doctor said my ebv levels have dropped and my igm is negative, but I had a positive ANA test. She referred me to a rheumatologist and I made an appointment but it’s a 3 month waiting list to get one. I had an ultrasound done and it came back as normal looking nodes just enlarged. But after 8 months of swollen throbbing lymph nodes it’s starting to feel discomforting in my neck and I just want my normal neck back. I’m worried that they will never go away and need to live like this for life. If my ebv levels have all dropped then why isn’t the swelling getting better? Has anyone else had a similar experience?
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Hello Justin, I’m Katie and I got diagnosed with mono at the end of 2024 going in to 2025. I too was apart of the unlucky group that caught mono as an adult vs a teenager. I am having the same issues as you and I’ve been to multiple doctors and still no answers. I have nodes behind my ears, under my chin and on the back of my neck as well as near my collar bone but only on the left side. I also developed erythema nodosum after and my arms and legs were covered in painful lumps under the skin. The lumps eventually went away but they left discoloration. My lymph nodes however have never went away and they give me a headache most days. I’m sorry there aren’t any answers for us, I have a referral to rheumatology but they are pretty backed up with appointments so it’ll be a few months before I even get seen. Hopefully someone can help us! I’ve also had all the blood tests my doctor can think of but no luck there either