a wild wild day with doctors (long post sorry, but tell me could you make up this crap?)

Hi All,

The last time I posted I was on my way for a 5 day, 4 night camping trip over the holiday weekend with my family to a music festival in upstate NY. I know I posted about my reluctance for going on the trip since I knew it would take alot out of me, but I would have never thought in a million years the events that trip would cause.

I was so careful while I was there...resting, drinking plenty of water, watching my time in the sun, etc....... except one afternoon there was a set of music I wanted to hear. I was smart...the music started at 3 so I left my campsite at 3 not wanting to be in the crowd and trying to keep my sun exposure to a minimum. I wore an ankle length skirt, a 3 quarter sleeve t-shirt, and covered any exposed skin with spf 85.

Within about 30 minutes of exposure my skin felt tingling...so I put on more sunscreen just to make sure I wasn't burning. By the end of the set which was in total about 90 minutes I was feeling terrible......maybe it was just way to warm or the direct sun was wearing me out...nope...I was covered in these weird blisters. They were on my hands, feet, ears, back of my neck, sides of my face and down my arms. The ones on the back of my neck were extremely painful...so I went to the medical tent at the show and they put a nice soft gauze on it to protect them and give me some comfort.

Now this is Saturday and we were there until Monday. Sunday was spent hiding out until the sun went down. Monday we returned home (thank god) and Tuesday morning I called my rheumy because i was instructed if I get any rashes to show them. Well thankfully I actually thought ahead and took pictures of my rash before they started to fade, because my rheumy didn't return from her holiday until yesterday....now comes the fun stuff.

I see my rheumy yesterday and the look of shock when she sees me is classic....the "oh my goodness" and "what is this?" not comforting to hear, but I explained how I felt, what happened blah blah blah.....all of a sudden she jumps up from her chair and declares that she "THINKS" she has seen this before..that she wasn't sure and what was the name of it again...as she is running from the exam room to her office. She comes back in with this book that I can only assume holds her magic spells and divination chants (just kidding) and she starts typing away furiously on her computer while telling me that I have to see a dermotologist TODAY...and I look at her like she's crazy because I know as does everyone else here that getting into a specialist the same day is like trying to walk on water....and tell her if she wants to try I can go but I don't think it will happen.

Well apparently the dermo was equally as excited at what this could be because she agreed to see me that afternoon...so I leave rheumy's office with a fistful of tests that need to be done THAT day and an appt with dermo and off I go... (with still NO treatment for the fibro although I asked again because quite frankly being in pain all the time kind of stinks)

I stop for something to eat because I hadn't had breakfast yet, and head to the lab...and thankfully the wait was very short. By looking at my scripts I see she is re-testing for lupus...and then she is testing for something I have NEVER heard of. ...porphyria...but hell that doesn't sound too bad....until it's my turn to get the tests logged and NO ONE has heard of it and they are not sure how to test for it....and have to call another, larger lab to find out what I need and they assure me that my specimens will be sent to the larger lab...but I have to now collect my pee in a giant orange container for 24 hours to complete this test...(my husband is thrilled about that one considering you have to refrigerate it) They draw what they can and off to the dermo.

Now I have to give the rheumy props because as I am sitting in the waiting room I hear them booking earliest appts for Nov...and she got me in the same day...and everyone was strangely excited to see me..kind of in a twilight zone sort of way... I go in , give the backround to this very nice pa.. who goes out and gets the dr....who is very excited to see me....she looks me over for a minute while the pa fills her in, excuses herself, and brings back two of her partners in the practice who are also very very happy to see me.....not comforting....they are commenting back and forth when I finally interject... "I had the blisters in my mouth as well" and you would have thought I had told them the winning lottery numbers....I open my mouth and 2 docs look inside muttering joyfully about classic this and unique that while the very cute pa says I am going to show you some pictures..what do you think the rash at it's peak looked closest to... and opens up this book with the most disgusting, graphic pictures of skin mis-haps I have EVER seen. Then she says" well what was the most painful" I said the back of my neck....she said well did it look anything like this....I said I don't know....she says well why not...I said again looking at her in awe and stupidity....because they were on the BACK OF MY NECK....I can't SEE the back of my own neck....and she looked dumbfounded... This is going on while the other 3 doc are muttering about tests and such and it is decided that they want skin biopsies of the rash sites....and finally I ask..

What exactly is this...what are we looking for and what does it mean? the head dermo tells me " well it could still be lupus, however it could be something else" to which I reply " what my rheumy said?" and she says...well yes...so I ask well what exactly is that and what does it do to you .....and she says: well lets just hope it's lupus.....not to comforting......and that was all the info she would give me..hope it's lupus? I thought we were supposed to hope it isn't lupus...

so six stitches later from skin biopsies and no information other what I can obtain from the internet... and feeling like someone just beat the daylights out of me from the rash, the pain, the dizziness and the low grade fever...I am sitting here wondering what is really going on...considering my rheumy still won't give me fibro meds even though she is sure I have it....

Just thought i would share...anyone ever had a weird experience like this one?

I think the thing that threw me the most with the whole experience was how excited everyone seemed to be that I may have this whatever it is...it was so very strange...like I was a rare coin that was picked up off the street and brought to a coin collectors convention...They were all like kids in a candy store with their father's no limit credit card...just bizarre

Hopefully the doctors will be able to determine what you have. Taking pictures of rahes and blisters or any skin problems you aren't familiar with is a good idea. Initially, I brought pictures to my rheumy and then dermatologist....sometimes a biopsy is needed to get a diagnosis.

I do understand about seeing the doc circuit ASAP when there is something weird going on...it is a good thing, they can get you in quickly...I'm a mystery patient myself...my body doesn't always follow the norm which complicates getting a dx. Good luck to you!

Hugs, Robin

That sounds realy bad... i looked up that porphyria thing u mentioned and that doesn't look good at all... I hope it turns out to be something different. Is it possible that its maybe some kind of sun allergy?

Fiona

WOW...what a ride!  So sorry!  I know the docs didn't think it was sun poisoning but my BIL developed  polymorphic something or another after being out in the sun...it took them forever to figure it out.  It's a form of sun poisoning but somewhat rare.  He gets painful blisters all over and feels very ill.  He was eventually discharged from the Army because of it...after suffering for weeks while they ran all kinds of tests.

Just a thought!

Donna