When the doctor completely blows you off, but might be right, what next?
August 17, 2017 4:07 PM   Subscribe

I've been having strange symptoms that have lasted 10+ days that are reminiscent of mononucleosis or lymphoma. Doc basically shooed me out of his office with "it's a virus" without so much as even touching me.

On Aug. 6 I took a 7(!!) hour nap in the middle of the day. When I woke up, I thought - oh shit. I am about to come down with something really nasty. I was congested and had that pre-sick feeling. The next day, I wasn't congested, but since then I've experienced these symptoms:
-extreme fatigue
-random fevers
-waking up in a sweat
-waking up 2-3 hours after I've gone to sleep for no reason
-neck and shoulders very sore
-random pain under left rib
-labile blood sugars(i am a type 1 diabetic)
-MULTIPLE swollen lymph nodes in neck (only developed since seeing doc on Aug 14)

What I DON'T have is congestion, sore throat, or coughing. I also have no obvious outward signs of infection anywhere.

So, back to the doc visit. I went to my endo and he said "it's a virus and not worth testing to figure out." He didn't do anything besides listen to my breathing. He didn't look at the graphs of my blood sugars. I thought "hmm, ok. cool." I thought it was probably mono before I went, and was happy to have that confirmed...but now as time goes on and my symptoms are not improving I do not think he was right.

Here's my actual question.
1. Do you think this symptomology is worth going to the hospital and getting blood tests +2nd opinions or can I trust his assessment?

** If anyone would like to share their experience with confirmed mononucleosis please do. These symptoms feel like they might be too severe and too long lasting but I have no basis of comparison. Does this sound like how your mono felt?

You are not my doctor, this is not medical advice etc. etc.
posted by marvelousmellitus to Health & Fitness (12 answers total) 1 user marked this as a favorite
IANYD, and I certainly have no way of doing a physical exam on you either, but this sounds like a virus. I think going to the emergency room would get you an expensive CBC and BMP, but not an admission, unless you were in DKA. If your symptoms don't improve in another week or two, then go back to your doctor. I hope you feel better soon!
posted by gemutlichkeit at 4:20 PM on August 17, 2017 [1 favorite]

Did you see a primary care physician, or your endocrinologist? You need an internist or family physician for this; your endocrinologist likely hasn't seen a case of mono, or lymphoma for that matter, since he/she was in training. If this was an internist/FP, I would go back to the same doctor saying, it's been 10 days, I'm not better, I'm getting worse, my lymph nodes are swollen and it hurts RIGHT HERE (point to left ribs). If they still blow you off, time for a second opinion and a new PCP. An urgent care center is another option, but less ideal because of lack of continuity. A hospital ER is going to triage you right down to the bottom of the list; they might examine you and do some basic tests but will most likely tell you to follow up with your primary.

For what it's worth, 2 weeks of acute fatigue is well within the range of expected for mono.
posted by basalganglia at 4:23 PM on August 17, 2017 [6 favorites]

I think you should go back to your own doc and say hey, this hasn't gotten better. Please do some tests to rules out x and y, and see what he says. This could be convenient and inexpensive.

If you don't trust your doc, especially for not giving a backup plan, shop for a new primary. But maybe after you're better or at least diagnosed.
posted by Kalmya at 4:25 PM on August 17, 2017 [1 favorite]

I have had doctor-confirmed mono twice, once as a child, once as an adult. In both cases, my symptoms lasted much longer than yours (I missed three months of ninth grade, and was sick for months as an adult also). However, the doctors confirmed it specifically because there are dangers with mono (splenomegaly, enlarged spleen, for one), and you should know to be careful of those things if you have mono, so I'm not sure why your doctor wouldn't have wanted to run blood tests for you.

I'm sorry; it sounds like you had some really terrible patient care here, if your doctor didn't explain any of it to you. Can you go back to/call your doctor and say that you're not better and in fact you now have enlarged lymph nodes?

I hope you feel better soon!
posted by lysimache at 4:27 PM on August 17, 2017 [1 favorite]

I had confirmed mono. The main symptom I remember was the worst sore throat of my life. I was in bed for a month. When my brother had it, he missed a semester of school. Mono can last a very long time.
posted by FencingGal at 4:39 PM on August 17, 2017 [6 favorites]

My experience was basically the same as FencingGal's. I basically slept through the first two weeks of the semester, and then struggled through the next month or so. By far the worst sore throat of my life (memorable 20 years later). I remember forcing myself to drink a can of soup per day so I would get some nutrients and liquid, but that was the extent of what I could handle, eating-wise. I must have had more liquids, but seriously, it just knocked me off my feet.
posted by ktkt at 4:45 PM on August 17, 2017 [3 favorites]

Your doctor didn't send you away because he was 100% positive that it was not mono and unwilling to entertain the possibility, your doctor sent you away because he felt that you were a) not in immediate or short term danger due to your medical condition, and b) not likely enough to be mono or anything else intervenable to subject you to the cost, inconvenience, and potential harms of a thorough workup. In the case of mono specifically the blood test often stays negative in the first few weeks of infection, so if he was on the fence about testing, that may have pushed him towards not bothering.

Outpatient doctors do this all the time but do a really bad job of explaining it to patients. They want and expect you to come back if your symptoms worsen or fail to resolve. If they assumed that no one would ever come back, outpatient medicine would be practiced extraordinarily differently.

If your endo functions as your PCP (sounds like maybe yes if you are a T1D), definitely go back. If you have a family physician/internist for a PCP, definitely check in with them.
posted by telegraph at 5:18 PM on August 17, 2017 [15 favorites]

I had a "mono-like" illness in 10th grade that knocked me out for most of a semester. I slept something like 18-20 hours a day for weeks. Years later I had actual mono. Memorable for the worst sore throat ever, with green and white spots. Knocked me out for a couple of weeks, too.
posted by Princess Leopoldine Grassalkovich nee Esterhazy at 5:52 PM on August 17, 2017 [1 favorite]

I'm not sure how long after 8/6 you saw the doctor, [EDIT sorry I reread and found the answer, the 14th. but my advice is the same.] but if he thought you did have mono, he might not have bothered with the test because false negatives are fairly common early on so a negative test wouldn't rule it out. I believe the rapid test (the one they do if you go to an urgent care place) is most accurate two weeks after symptom onset (so, about now.) If you test negative now and also have the sustained period of severe symptoms to point to, it should be easier to get them to run tests for various other stuff.

I had mono in grad school and my memories are hazy but I think it felt like I got punched in the liver and wanted to die. not being able to drink made it all worse. I don't think it's abnormal for the exhaustion and malaise to last about a month, but if I were you I'd go to any urgent care clinic and collapse in the exam room chair until they give you the damn blood test. if it's positive, you can relax and collapse at home without worrying any more.

Last year I went to an urgent care place with extreme fatigue and swollen misery glands and got them to do a rapid strep, mono, and flu test without having to do barely any pleading at all. probably because I wanted the guy to explain to me whether you can have mono twice, or have a recurrence that feels just like the first time, or not, and he thought ordering a lab test would be easier and more fun than giving me a free med school lecture or palpating my glands some more.
posted by queenofbithynia at 6:43 PM on August 17, 2017

Random data point: there has been something floating around that's been viral and kicking people assess, me and my wife (and my. Mil nursing home sigh)has the two week knock our feet sore throat monolike death viral plauge that isn't anything actually special. I slept for almost 36 hours straight with a couple bathroom breaks and nibbles. I was SURE I had mono until like Tuesday actually.

It took about two weeks but then I started feeling better.

See your PCP for general testing , or urgent care clinic at this point. It won't hurt to get the testing done at a general clinic if you aren't feeling better. I hope you feel better soon.
posted by AlexiaSky at 7:20 PM on August 17, 2017

Coming in late, but for what it's worth, I had mono without ever having a sore throat or swollen lymph nodes. I did have a massively swollen spleen (with pain on my left side), night fevers/sweats and ridiculous fatigue. So it's possible to have atypical mono. See a primary care doctor for confirmation, and hope you feel better soon!
posted by jhope71 at 11:54 AM on August 18, 2017

I had mono for months before I knew what was wrong with me (started as a mild case), and I didn't have a sore throat until I got tonsillitis as a secondary infection at the very end. I don't really have any advice for you though - or rather, I have so much conflicting advice floating around my head that I can't sort through what might help you that hasn't already been said. Anyway, another vote for 'it could still be mono'.
posted by dust.wind.dude at 4:01 PM on August 18, 2017

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