Mystery Disease
May 14, 2010 10:47 AM   Subscribe

What Is WRONG with me, for God's sake? Last Wednesday night I was struck with a stiff neck, and really swollen knee joints. By end of work Thursday (driving 300 miles) I was wholly incapacitated with a low grade fever, upper back pain and lumpy knees. Now, much of this is not new, as I already have blood cancer and fibromyalgia, but this is way beyond the scope of these diseases. (I am immunologically compromised)

I was then bed bound until Wednesday where I could not stand the pain, and went to my rheumatologist who immediately drained the huge lumps on my knee to test, it was very cloudy, as was my urine. He suspected meningitis, whereas he immediately placed me in isolation at the hospital and began an infusion of vancomycin and saline. It was determined that I presented no neurological symptoms, and passed on the lumbar puncture (thank God!). I was sent home awaiting the results of several blood and urine cultures (my urine showed a very high white blood count). Thus far I am HIV neg., HEP-A,B & C neg., and Lyme neg. TB is being looked at, as are other types of typical diseases known in the area of the country I live (Shenandoah Valley VA). When I mentioned that I was in 9 tropical countries in Feb-Mar this year, this really aroused my doctor's curiosity. The first question she asked is about Haiti, where I didn't go, but was close to. I spent time in St. Lucia jungles, volcanoes and fishing villages, and do not remember being bitten. I think she has ruled out malaria. Any suggestions? I am now wheelchair bound and the pain is intractable. I am on Vicodin and Valium to control muscle spasms. I feel like this is now a fight for my life, and this community is the penultimate source for innovative ideas and suggestions. Anything and everything will be taken into consideration.
posted by ~Sushma~ to Health & Fitness (16 answers total) 1 user marked this as a favorite
Best answer: Call your rheumatologist back and get her to refer you to an infectious disease specialist. Think very hard about what you ate and drank while you were in those countries-- anything with raw milk? Unpasteurized soft cheeses? Were you in close contact with animals during your trips? Does your fever get higher at certain points of the day and then abate a bit?

I am no doc, but I would wonder about brucellosis and other similar febrile diseases. It seems like fevers and joint complaints go along with a lot of tropical disease; you'll need a pro with experience in those sorts of cases to sort it out. Please keep us updated.
posted by fairytale of los angeles at 11:01 AM on May 14, 2010 [2 favorites]

I feel for you, but no one here is going to be able to help you. You need to go to the doctor - either again or a different oncologist.
posted by Lutoslawski at 11:03 AM on May 14, 2010 [1 favorite]

It sometimes turns that that people who have cancer can develop bizarre and unexpected symptoms, as a result of what is technically known as para-neoplastic syndrome. It often comes up on the TV show "House". In essence, cancer can confuse the immune system. Cancer cells combine the characteristics of the body's own cells with the characteristics of an invading pathogen, therefore you can get an auto-immune reaction which can damage any part of the body leading to a very wide range of possible symptoms.
posted by grizzled at 11:03 AM on May 14, 2010

Seconding calling a rheumatologist. IANAD, but there are a number of things that could be wrong. My aunt had similar sounding symptoms and she was diagnosed with polymyalgia rheumatica.
posted by anniecat at 11:17 AM on May 14, 2010

Oddly enough, I just had a bout of something similar. They suspected viral meningitus, since my fever wasn't crazy high. I started feeling weak and shakey on Sat. couldn't move my neck on Sunday, most major joints were comprimised by Monday w/ alarming jolts of pain and "sense of doom", took some anti-virals, narcotics, and steriods, and now, Friday almost a week later, and pretty much ok, just very weak.

I don't know what that is supposed to tell you, except that perhaps you will be lucky like me and it will be viral and resolve on its own in the next week or so.
posted by stormygrey at 11:18 AM on May 14, 2010

In essence, cancer can confuse the immune system. Cancer cells combine the characteristics of the body's own cells with the characteristics of an invading pathogen, therefore you can get an auto-immune reaction which can damage any part of the body leading to a very wide range of possible symptoms.

Yes, this was my first thought, too. I was recently diagnosed with colon cancer, and my immune system had been going crazy for the past year (most notably, I seemed to get the swine flu before it had "officially" hit L.A., which was then followed by a series of purpuric rashes on my legs, seemingly caused by some sort of autoimmune vasculitis, that looked like I'd contracted the plague). The same thing happened in the year leading up to my thyroid cancer diagnosis about 13 years ago (the docs all thought I was developing some sort of autoimmune disease, possibly lupus or rheumatoid arthritis).

Which suggests to me that, given both your history of cancer and your recent travel, you might need to see an infectious disease specialist and a hematologist/oncologist in addition to your rheumatologist.

Good luck.
posted by scody at 11:19 AM on May 14, 2010

With due respect, if your pain is intractable, you don't need the penultimate source for innovative ideas. You need urgent medical attention. Go back to the hospital and get reassessed immediately.

It may take time to get answers about what's going on (the list of possibilities is long, and getting a sampling of them here is unlikely to be helpful), but you shouldn't wait on that to get adequate control of your pain.
posted by drpynchon at 11:19 AM on May 14, 2010

Why are you on Metafilter instead of going to the ER?
posted by Threeway Handshake at 11:24 AM on May 14, 2010 [3 favorites]

And yeah, chiming back in to say that if you've become wheelchair-bound in a week and the pain is intractable, you need to get to the ER or at the very least, get your rheumatologist to facilitate an urgent referral to another specialist by tomorrow. Whatever it is -- and none of us can tell you -- if you really feel you're fighting for your life then you need to pursue immediate medical care that will get you closer to an actual diagnosis and treatment plan.
posted by scody at 11:33 AM on May 14, 2010

This is way, way, WAY beyond the scope of what AskMetafilter can offer you.

Anything we have here would be throwing darts in a dark room.

Do you have any relationships issues? Food left out too long? Need ideas for desert-island music? We're there for you.

This, though? OVER. OUR. HEADS.
posted by Cool Papa Bell at 11:41 AM on May 14, 2010 [17 favorites]

Are you writing from home or at the hospital? If you're at home I'd say it sounds like you need to get yourself checked back in, if you're in that much pain on top of the Valium and Vics, combined with the feeling that you're fighting for your life (which sounds close enough to the "feeling of impending doom" that is generally cause for transport).

Assuming you're writing all this from the hospital and are just looking for ideas for the hell of it, I'd really be hoping for an actual rabies test and not just stopping after "I don't remember being bitten" (which is where I'm assuming they were going with that question). That's less because I have any reason to suspect it's more likely than any of the thousands of other things that can present the same way, but just because the treatment is so dependent on early intervention.

Also sounds like maybe you want to talk to your physician about getting someone who has experience with tropical diseases involved, if they have not already done so.
posted by Kadin2048 at 12:19 PM on May 14, 2010 [1 favorite]

UVA hospital maybe, instead of wherever you've been? Go somewhere where there are people who know about exotic tropical diseases. Can you get to DC?

I hope you start feeling better soon.
posted by mareli at 12:25 PM on May 14, 2010

Response by poster: I love the infectious disease specialist idea. I respectfully disagree that this is not the venue, as I've already populated ideas to put into action. Why wait in the ER on a hard slab for the next five days, I can be abused elsewhere for less then $1500 a day. Everything is being cultured, blood, synovial fluid and urine, it's waiting.

Scody, I wish you well my friend.
posted by ~Sushma~ at 3:51 PM on May 14, 2010

There are excellent infectious diseases people at UVA.
posted by killdevil at 6:09 PM on May 14, 2010

Response by poster: Resolved-after $39,000 and 35 blood tests it turns out to be Lyme disease. An astute nurse practitioner requested a western blot after 4 negative ELISA. Horrible disease, absolutely horrible. Thanks all.
posted by ~Sushma~ at 9:46 PM on July 2, 2010

Wow... relieved you got a diagnosis (though so sorry to hear of the expense and the hassle of 35 [!!] tests). Hope you're on the road to recovery, Sushma!
posted by scody at 9:52 PM on July 2, 2010

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