Lymphoma fear - mimicking mono ?? Positive EBV

[gailveronica]

Hi, y'all!

I've posted here a bit, talking about left-sided tingling (my doctor did a brain MRI, found some lesions on my brain, I have a neurologist appt in April - but this is unrelated, she thinks). I've been sick for about 2 1/2 weeks now, with lightheadedness, extreme weakness (legs feel like they're trudging through quicksand), weak arms, fatigue (but can't sleep), nausea, diarrhea, etc. Initially an urgent care told me I had an ear infection and put me on amoxicillin for 7 days. That didn't do much for me, so I went to the Emergency Room. They ran some blood tests and urine tests and had radiology/neurology double-check my MRI and they said I was fine, just a viral infection taking its time getting out of my system.

So this past Friday I went for my ER follow-up at my doctor, and I'm not feeling much better and I also found a small (around 1.5-2cm), hard node near my right hip. My doctor said this is a bit high to be a lymph node, but even if it is, it doesn't feel concerning to her. She did some blood tests (Lyme, ANA, Epstein-Barr) and I was positive for Epstein-Barr, for both past infection (I've had mono before) and current infection (which I think is weird, right? can you get mono again??). Also my SED/ESR rate is 28 (should be 1-20 mm/hr) and my CRP is 0.8 (should be 0.0-0.5). So she started me on steroids to treat the active Epstein-Barr (mono) virus for this week and I go back next week for another blood draw.

I'm positive I have lymphoma. All this started with a numb/tingling chin and leg and when I read about that online, I read that it almost certainly is metastatic lymphoma. I also have a lump (ultrasound said lipoma) behind my right knee. All my blood tests are fine and normal - except the Epstein Barr and ESR/CRP, which I've read can be elevated in lymphoma.

At this point I've seen:

My primary care doctor (multiple times)
Two ER doctors (both came in during rounds and examined me)
3 Urgent Care doctors
Radiology has looked at: Brain MRI (2 white matter lesions, tbd), Spine X-ray (all clear), Ultrasound of lump behind right knee (lipoma)

I know I've gone overboard, but I can't shake the feeling something is very wrong. I know lymphoma symptoms usually involve fever and night sweats (of which I have neither) but can also just involve fatigue and a single swollen node (of which I have both).

I'm really in bad shape, I'm feeling very sick and I've had mono before, and this doesn't feel like mono to me. It feels like something sinister :( How do I shake this feeling?

[RadioGaGa]

One of the reasons they don't like doing MRIs on everyone is because often they find ''incidentalomas''.

This sounds scary and ominous, but it isn't. It's basically just lesion(s) which are there, usually congenital, but are of no clinical significance. I believe that for every 100 MRIs ordered on people, it's either 1% or 10% have incidentalomas. I can't remember the exact statistic on this as I learned it when I was heavily obsessed with brain tumours.

99% of the time the incidentalomas can be left alone and are completely benign

IMHO you can rest assured as you've been seen by so many different clinicians. Yes, '' a'' clinician can miss important signs, but you've had so many come and look at you, they can't all be wrong.

[gailveronica]

Thank you! My doctor is actually a Physicians Assistant (2 years of post-university training) but you're right, she probably would know if it was a lymph node or not...

[RadioGaGa]

Dentists and medics spend all day dissectiny bodies in ''cadaver class''. They both know anatomy well (dentists face and neck, doctors everywhere). If your doctor has felt this lump, said it isn't a lymph node because of its location, I'd definitely trust her judgement.

Some dental schools only use pro sections just incase someone wishes to correct!

[RadioGaGa]

Thank you! My doctor is actually a Physicians Assistant (2 years of post-university training) but you're right, she probably would know if it was a lymph node or not...

Absolutely. Would be like asking me if I know the difference between a capsule or caplet!

[utrocket09]

Hi, y'all!

I've posted here a bit, talking about left-sided tingling (my doctor did a brain MRI, found some lesions on my brain, I have a neurologist appt in April - but this is unrelated, she thinks). I've been sick for about 2 1/2 weeks now, with lightheadedness, extreme weakness (legs feel like they're trudging through quicksand), weak arms, fatigue (but can't sleep), nausea, diarrhea, etc. Initially an urgent care told me I had an ear infection and put me on amoxicillin for 7 days. That didn't do much for me, so I went to the Emergency Room. They ran some blood tests and urine tests and had radiology/neurology double-check my MRI and they said I was fine, just a viral infection taking its time getting out of my system.

So this past Friday I went for my ER follow-up at my doctor, and I'm not feeling much better and I also found a small (around 1.5-2cm), hard node near my right hip. My doctor said this is a bit high to be a lymph node, but even if it is, it doesn't feel concerning to her. She did some blood tests (Lyme, ANA, Epstein-Barr) and I was positive for Epstein-Barr, for both past infection (I've had mono before) and current infection (which I think is weird, right? can you get mono again??). Also my SED/ESR rate is 28 (should be 1-20 mm/hr) and my CRP is 0.8 (should be 0.0-0.5). So she started me on steroids to treat the active Epstein-Barr (mono) virus for this week and I go back next week for another blood draw.

I'm positive I have lymphoma. All this started with a numb/tingling chin and leg and when I read about that online, I read that it almost certainly is metastatic lymphoma. I also have a lump (ultrasound said lipoma) behind my right knee. All my blood tests are fine and normal - except the Epstein Barr and ESR/CRP, which I've read can be elevated in lymphoma.

At this point I've seen:

My primary care doctor (multiple times)
Two ER doctors (both came in during rounds and examined me)
3 Urgent Care doctors
Radiology has looked at: Brain MRI (2 white matter lesions, tbd), Spine X-ray (all clear), Ultrasound of lump behind right knee (lipoma)

I know I've gone overboard, but I can't shake the feeling something is very wrong. I know lymphoma symptoms usually involve fever and night sweats (of which I have neither) but can also just involve fatigue and a single swollen node (of which I have both).

I'm really in bad shape, I'm feeling very sick and I've had mono before, and this doesn't feel like mono to me. It feels like something sinister :( How do I shake this feeling?

My aunt had a blood cancer in the same family as lyphoma. If you had a blood cancer, which lyphoma technically is, it would have shown in blood work. Your other test results would have been unusal as well.

[gailveronica]

My aunt had a blood cancer in the same family as lyphoma. If you had a blood cancer, which lyphoma technically is, it would have shown in blood work. Your other test results would have been unusal as well.

My inflammation rates were slightly elevated (ESR/Sed rate: 28 when it should be 0-20 mm/hr ; CRP 0.8 when it should be 0.0 - 0.5 mg/dl) and my Epstein Barr came back positive (both for previous and current infection) - would that be the case with blood cancers? Or would they be looking more at white blood count / lymphocytes / etc ? Those were normal last week.

[utrocket09]

My inflammation rates were slightly elevated (ESR/Sed rate: 28 when it should be 0-20 mm/hr ; CRP 0.8 when it should be 0.0 - 0.5 mg/dl) and my Epstein Barr came back positive (both for previous and current infection) - would that be the case with blood cancers? Or would they be looking more at white blood count / lymphocytes / etc ? Those were normal last week.

If your white and red counts were normal then no cancer

[gailveronica]

That does make sense, and I will try to take comfort in that.

I have read cases where white/red counts don't seem to matter much for lymphoma - some people were diagnosed based on a swollen node / fatigue alone (which I have). The concerning part, for me, is that my chin went numb back in December - chin / jaw / cheek. And when you google "numb chin," you get "numb chin syndrome" which is almost always an "ominous sign" of malignancy or metastatic cancer, most likely breast cancers or lymphomas.

I guess I wouldn't be so concerned if it weren't for that initial presentation of numb chin, then suddenly falling ill and not being able to get better. Epstein Barr explains a lot of it, of course, but no sore throat, no fever, no night sweats.... just fatigue, heavy arms/legs, nausea (and stomach pain around spleen region, lack of appetite), and that one lump on my hip which most likely is not a node but... of course, health anxiety is at its peak right now. :/