Your mono experience

[MamaLema]

Ive been so stressed the last few weeks and would love to hear your mono experience stories.

DS27 has been diagnosed with mono even though he tested negative on 3 separate blood tests. The doctors said it’s common to get a negative results even if you’re positive.

Today is day 24

Fever 24 days so far

Extreme fatigue. DS is sleeping 16-20 hours per day.

Severe throat pain with pus. He was prescribed steroids for 5 days because he lost 18 pounds in 2 weeks because he couldn’t even digest purée foods or drink water.

Severe drenching night sweats for the first 2 weeks but gone now.

Swollen lymph nodes.

Sensitivity to light and sound that went away after a week.

Has developed a very bad cough with phlegm which I don’t think is a mono symptom.

We are waiting for a phone call for a lymph node biopsy since his fever is still present to rule out the c word. Once the doctor said it’s a possibility I almost fainted in the doctor’ office. I haven’t eaten or slept well the last 3 weeks for fear that it is something worse than mono.

Anyone else had mono and had a fever and fatigue for a long time? I would be more calm if the mono test was positive but I’m so scared since they can’t for sure say what’s wrong with my boy.

Also if he had the c word would he have phlegm with his cough or would it be more of a dry cough?

I apologize for being an absolute nervous wreck,

 

[Rogue1677x]

My experience with mono was very different, however, I also don't seem to present with typical symptoms (my doctors words, not mine).

I was 19 and in college, very tired (I've always been a very low energy person who can sleep 12 or more hours a day). I wasn't eating much because I was nauseous and I noticed a large lymph node...I mean, it was huge.

Went to the doctors and they rushed an ultrasound became there was concern it was actually a dissected artery. Never once did they think it was mono. A student doctor actually asked if I was in school and a few other questions, they put a STAT order on that bloodwork and sure enough, it was mono.

 

[disneydreamer1980]

I had mono when I was 18, tested positive, had very sore throat, fever and fatigue. My lymph nodes were enlarged also. I wasnt as severely sick as it seems your son is though. Hopefully they figure out what’s going on with him soon and hope he gets better soon.

 

[Southernmiss]

How about autoimmune disorders?

My daughter had similar symptoms at age 17 that turned out to be systemic lupus.

It was an ordeal to get her diagnosed. A functional medicine doctor did more blood work than her MD. It was that blood work that got her diagnosed after a month of suffering symptoms like your son's and losing 20 pounds.

Your post took me right back to those awful days

Big hugs and prayers for answers and the road to healing.

 

[LoveDaisy]

I had mono in high school and Hodgkin lymphoma (cancer in my lymph nodes) when I was 29.

Mono I ran a fever, very tired, sore throat, and regular swollen lymph nodes

Cancer I was tired, my lymph nodes were so swollen I had to cut my tshirts to go around my giant neck, I only ran a fever when it moved stages (I was stage 2B when diagnosed which meant it was moving from 2 to 3 and I had a fever but it was not prolonged) and I picked up any illness going around in a second.

Wishing your son the best!

 

[princesscinderella]

I have no advice just wanted to offer you a virtual hug I hope the drs can figure out what’s making your son so ill and that he makes a speedy recovery.

 

[tinkerbellandpeterpan]

I had mono a few years ago. I was exhausted for months. I couldn't sleep enough. No fever. I did test positive for awhile but then tested negative even while I still had symptoms. It was honestly awful.

 

[barkley]

both my kids had it when they were in high school-

both slept endlessly (had to wake them to eat/fluids)*

both sore throats but not raging*

both fevers but not that long*

night sweats/cough*



* all of these symptoms both my kids had with covid though the oldest's throat was much worse (at one point a strep test was done-negative)-oldest had the worst of our entire household-heavy symptoms for almost 3 months, oldest has long term covid and 17 months after the positive test still deals with exhaustion, night sweats and nausea/gastric distress (i have long term and get bouts of exhaustion).

 

[AussieFan8]

I don’t remember all my symptoms except the severe fatigue, sore throat, and a lengthy fever that peaked at 105.7 degrees, but I vividly remember testing negative for mono and waiting fearfully for the call to find out if it was cancer. It was mono. Sending all my positive thoughts and energy your way for the same outcome.

 

[MamaLema]

both my kids had it when they were in high school-

both slept endlessly (had to wake them to eat/fluids)*

both sore throats but not raging*

both fevers but not that long*

night sweats/cough*



* all of these symptoms both my kids had with covid though the oldest's throat was much worse (at one point a strep test was done-negative)-oldest had the worst of our entire household-heavy symptoms for almost 3 months, oldest has long term covid and 17 months after the positive test still deals with exhaustion, night sweats and nausea/gastric distress (i have long term and get bouts of exhaustion).

That’s tough. I’m sorry to hear that.

 

[SpaceMan5]

Ive been so stressed the last few weeks and would love to hear your mono experience stories.

DS27 has been diagnosed with mono even though he tested negative on 3 separate blood tests. The doctors said it’s common to get a negative results even if you’re positive.

Today is day 24

Fever 24 days so far

Extreme fatigue. DS is sleeping 16-20 hours per day.

Severe throat pain with pus. He was prescribed steroids for 5 days because he lost 18 pounds in 2 weeks because he couldn’t even digest purée foods or drink water.

Severe drenching night sweats for the first 2 weeks but gone now.

Swollen lymph nodes.

Sensitivity to light and sound that went away after a week.

Has developed a very bad cough with phlegm which I don’t think is a mono symptom.

We are waiting for a phone call for a lymph node biopsy since his fever is still present to rule out the c word. Once the doctor said it’s a possibility I almost fainted in the doctor’ office. I haven’t eaten or slept well the last 3 weeks for fear that it is something worse than mono.

Anyone else had mono and had a fever and fatigue for a long time? I would be more calm if the mono test was positive but I’m so scared since they can’t for sure say what’s wrong with my boy.

Also if he had the c word would he have phlegm with his cough or would it be more of a dry cough?

I apologize for being an absolute nervous wreck,

You have no need to apologize at all. You are feeling like as any of us parents would be feeling if we were in your shoes. I say that from our recent experience.

My DD24 was recently diagnosed with Mono but her symptoms were not as severe as your sons. There is quite a bit of back story prior to her getting Mono. It really revolves around the c word, potentially and reality and how we as parents deal with it.

Feel free to PM me if you like.

 

[Southernmiss]

For another child, a son age 21, we were also told the c could be a diagnosis 6 years ago this week. I had blocked it out of my mind.

That was also a very terrible, no good week.

He had flu like symptoms and shortness of breath and swollen lymph nodes and a mass on his lungs and was away at college 5 hours away.

A lung bronchonscophy showed it was an odd lung fungal infection that he was treated for with fungal medicine.

That whole week we spent in a hotel room waiting for tests and results. I worried, prayed, worried, doom googled and prayed some more. Nothing like hearing your son has a lung mass and we think it's cancer.

 

[FQLover]

Big hugs to you! I am sure that you are very scared. I am crossing fingers that you get some definitive news quickly.

Does your son have a swollen spleen? I got mono when I was 25. I was diagnosed with tonsillitis at the same time, so I definitely had the bad sore throat. I also had night sweats, fever, bad fatigue, and overall weakness. I missed three weeks of the first year of grad school. I, too, slept most of the time. I did not have a cough, as I recall. I did have a 7 day "mono pack," as they called it then. It was steroids, I believe.

I saw the NP every week after being diagnosed. She gently palpated my spleen every week. She had to do it carefully because it could. rupture. Has his doctor found this to be true for your son?

Although I went back to class after three weeks, I had to come home immediately after class and sleep more. It took me eight weeks for my fatigue and swollen spleen to diminish. I was advised by several people to folllow the doctor's rules to a tee, regarding what i could and could not do. Everyone knew someone who didn't listen and ended up with chronic Epstein-Barr disease. I did follow everything I was told and after 8 weeks or so, I did not have any recurring problems and healed completely.

I hope the same will happen for your son. Mono definitely varies in its severity; your son may just have a particularly bad case. Stay strong and keep breathing, Mama!

 

[RangerPooh]

I had mono (the first time) when I was 21, simultaneously with strep throat. Lots of abdominal pain, swollen throat, fever, plugged ears, aches, pains, slept lots. I could barely eat, drink, or stand for two weeks. It was rough.

 

[Pea-n-Me]

So sorry to hear of this. I can imagine how worried you are.

My DD was very sick and no one really knew what was going on. Symptoms were atypical, too - a lot of different complaints, if I recall, with pain and fever, etc. In the ER they did an abdominal CT and saw that all of her mesenteric lymph nodes (in her abdomen) were swollen. The doctor kept asking if she’d had Covid, saying that’s when they were usually seeing that (at that time), but she hadn’t had it then (that she knew of). They sent her home but did some bloodwork. A few days later she got a call saying that she was Epstein Barr virus positive (one of the viruses that can cause mono). At the time she was under a lot of stress with a new, tough job and in graduate school, etc. She had to rest and push fluids, etc.

Thoughts. Do they have your son on antibiotics for the pus in the throat? Have you tried giving him shakes to keep up with some of his nutritional needs? Was he taking Tylenol at bedtime? Tylenol causes sweating, it’s how it lowers the body temperature, and could mimic ‘night sweats’. (When they hear that they get worried. Along with profound weight loss.)

I had a cousin who passed of lymphoma, so when I got a random lump on my neck, I went through a surgical biopsy. Thankfully it was just a reactive node. I was told at the time that’s likely what it would be because the head drains all kinds of germs (especially this time of year) and those reach the nodes in the neck and sometimes cause inflammation. But because of that family history, they wanted to get it out and make sure it wasn’t anything.

Said prayers for you and your son. I hope it all works out for him. It’s so hard when our families have health issues.

 

[unrequited23]

I got mono at 18 in college. It was not as extreme as your son's case--but the first week and a half were rough. The pain from just swallowing saliva had me in tears. A frosty from Wendy's was the only thing that was even mildly appealing. (This was in the late 90's before greek yogurt or protein shakes were common.) By week 3, only the fatigue remained and it stuck around for another month.

 

[jo-jo]

A lung bronchonscophy showed it was an odd lung fungal infection that he was treated for with fungal medicine.

This is about 30 years ago. My mom had for months coughing up tons of gunk. Nothing helped. She couldn't sleep, her lungs were filling up. They pulled fluid out of lungs and they filled up again. They were this close to doing surgery. A Dr that is more familiar with diseases from the tropical areas, happen to hear doctors talking and said this looks like ????. It was (I don't know the right word) a fungus that normally lives in your mouth, got into her lungs and had a party with 3 billion friends. Mega doses of penicillin cleared it up.

To OP, hugs and more hugs. My son had mono 25 years ago, but it was basically sleep and sleep and more sleep. I had no idea it cause such problems.

 

[nancipants]

I had mono about 10 years ago. My lymph nodes got super enlarged, which was what initially alarmed me. Then I got sick. Sore throat so bad I could barely swallow with red and white splotches, fatigue, achy all over. Went to the doctor and was negative for strep but positive for mono. I stayed in bed for a few days but was able to go back to work after a week or so. Thankfully, I recovered pretty quickly after the steroid pack they gave me. I was extra tired for about a month.

 

[EllieJedi]

I had mono when I was 19 and tested negative for well over a month. I was consistently running a fever, sleeping 16-20 hours a day, swollen lymph nodes and spleen. I finally tested positive for the Epstein Barr virus. It took me about 3 months to fully recover.

 

[HannaBelle]

Oh, I am so so sorry, I had mono my senior year of high school (1988) and was out for three months. It was absolutely the sickest I have ever been in my entire life. I would not wish it on my worst enemy.

I had all of the symptoms your son is experiencing and it took me a good six months to get my energy back.

Probably 18 months to get back to normal.

I was absolutely exhausted and miserable every day. I went in weekly for bloodwork.

Have you been waiting for three weeks for the biopsy? I would strongly encourage you to follow up. That is a ridiculous amount.

Prayers and thoughts that your boy will heal quickly AND that he has his biopsy ASAP and that is it clear.