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Old 04-25-2012, 12:44 PM   #1
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Bizarre symptoms... can anyone relate?

Hi,

I just wanted to see if anyone has experienced or heard of anything like my symptoms. I do have an appointment with a Rheumatologist set up, but I thought Iíd see if someone else had gone through anything similar.

To begin with, I thought I should mention that I havenít had any type of recent acute illness (no GI, UTI, URI, etc.), no bug bites, no new medications or immunizations, no cuts/wounds/punctures, no contact with animals, children or patients, and no new detergents or lotions. I did have pretty significant enlargement of multiple cervical lymph nodes, but that was over a month ago and I had no symptoms aside from that. No one I spend time with has been sick recently or has gotten sick since my episode.

So, about a week ago I woke up and was starting my day when I had to run to my bed because I was about to faint (never happens). I generally felt lousy, but assumed I was just tired. Later in the day I had a pretty significant headache, and when I took my temperature it was 101. By the end of the day, I was completely wiped out. Before I went to bed, I noticed that my fingers felt a little swollen, so I tried to take off my rings. One came off, but the other one was already stuck on (normally they slide right off).

The next morning I woke up and could barely move: my toes, feet, ankles, and some fingers were so swollen they wouldnít bend. I couldnít move my big toes or right ankle at all, and I had almost no feeling in them; it was like they were disconnected from my body. My neck was in so much pain I could barely turn my head, and looking up and down was practically impossible. My knees were sore and stiff, but not noticeably inflamed. Then I started getting a rash (non-painful, non-itchy) that was especially prevalent near my affected joints, and also sporadically ran the length of my arms and legs. I wasnít able to leave my house for the next three days because my ankles were too swollen to function (it looked like I had sprained my ankles). However, my joints were only mildly painful, with no redness, heat, or pitting edema. Over all, my right side was affected more significantly than my left, but both sides had swelling in the same places. I had no swollen glands or other typical infectious symptoms, and my temperature was steadily 101 for three days. I have never had anything even remotely similar to this before.

I went to the doctor about 4 days after the start of the symptoms when I was finally able to ambulate and drive. They were pretty convinced it had to be lupus, based on my current presentation and my history. Iíve had what appears to be a malar rash (butterfly pattern) for a number of years, but it was especially bad during this episode. The rash on my joints was apparently consistent with what can appear with SLE, and Iíve had Raynaudís for almost 15 years. This year my Raynaudís attacks have been significantly more frequent and painful (some days occurring 6-10 times with no triggers, and lasting 30+ minutes). Iíve also been getting random nose and mouth sores for the past couple of years.

Then I got the blood work and absolutely everything was normal except for an elevated ESR. My CBC and CMP were within normal values, ANA panel was all negative, Rheumatoid Factor negative, and negative for syphilis. My WBC panel and clinical presentation basically ruled out bacterial infections, fungal infections, and allergic reactions, and doctors thought a viral infection was unlikely (but still possible).

The only other thing that might be worth mentioning is a past history of mono. I was diagnosed with acute mono twice, about 3 years apart, and both confirmed with CBC and heterophile antibody tests. The second time (in 2009), multiple doctors ruled it out before they ran blood cultures because aside from my throat, none of my symptoms were anything like mono. They even gave me Amoxicillin before checking for mono because they initially thought it was strep throat (despite a negative rapid-strep). I never got the typical rash from the antibiotic + mono, which they thought was even weirder. The roof of my mouth, gingiva, and buccal mucosa were completely covered in aphthous ulcers, and the nurse practitioner made a comment about autoimmune presentation and false-positive for mono. My face had the same intense malar flush that it did during this episode, and I had the same consistent low-grade fever. All my other symptoms were different though. To be honest, I wouldn't have really even thought any of the mono stuff was all that strange except for 2 doctors, a nurse practitioner, and 3 PAs all telling me they had never seen anything like it. Also sort of notable was that my boyfriend never got sick, and to this day has never had mono or any of the symptoms I had during that episode. No one else got sick either, but he definitely should have if it was infectious.

Now I'm perfectly fine and my joints have all come down and the rash is gone. Iím hoping this was just a bizarre, one time event, but I thought Iíd see if anyone has gone through anything similar? I was super relieved with my blood work, but also wish I had a better idea of what happened. Hopefully the rheumatologist will be able to figure this one out, but any input is extremely appreciated!

Thank you!!!

 
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Old 04-26-2012, 09:50 AM   #2
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Re: Bizarre symptoms...can anyone relate?

Had you been out in the sun the day or even up to a week before?

 
Old 04-27-2012, 04:56 AM   #3
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Re: Bizarre symptoms...can anyone relate?

I went for a walk 2 days before and had a mild sunburn on my neck/chest when I got home. Can the sun trigger something? That was probably the first and only time I had any prolonged exposure in over a month.

Thank you!

 
Old 04-27-2012, 11:10 AM   #4
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Re: Bizarre symptoms...can anyone relate?

Yes, sun sensitivity is part and parcel of at least 2 autoimmune diseases that I know of. I get a rash in places that were not exposed to the sun just like a sunburn after even a brief exposure such as sticking a bare arm out the car window for a few minutes or I get sick like I have the flu with fevers, nausea and such. You might want to check out the lupus board's stickies.

 
Old 04-27-2012, 01:58 PM   #5
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Re: Bizarre symptoms... can anyone relate?

Thank you so much! I think everyone was convinced it was SLE until my labs came back ANA/anti-dsDNA negative. My GP said it can come up sero-negative if it's in the early stages, but I'm still crossing my fingers that it was just a bizarre viral thing.

Thank you for your input! Plus, now I'll remember to mention the sun exposure to my rheumatologist next month if she asks. Hopefully it's just another weird coincidence.

I'm sorry to hear you have such a negative response to the sun :-/. I can imagine it isn't the easiest thing to avoid (especially if you get that reaction just from putting your arm out the window), so I hope there is something that gives you some relief!

 
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