What Could be Wrong with My Friend?

[diamond lil]

I have a good friend who is 19 years old. She has been battling this bizzare health problem for at least 5 years now.

Just some background: she is a non-smoker, non-drinker, non-drug user and at her ideal weight. She was previously misdiagnosed as having vasculitis (sp?) and the medication she was on severely damaged her liver. She was on steriods for a period of time (I'm unsure why, perhaps something to do with her liver).

She thinks she is allergic to heat or possibly her own sweat. Sounds weird, huh? When she is out in the sun, works out, or becomes warm for any reason, or if she takes a warm shower, she breaks out in hives and blisters all over her body. She must take cold showers and must have air conditioning on all the time.

She has been tested for MS and lupus by at least three different doctors. She has seen specialists at the University of Chicago Hospitals, the best in our area. Food and environmental allergies have also been eliminated by an allergist. She is currently waiting for an appointment with a specialist at the Mayo clinic.

She is severely depressed over her condition. I feel so terrible for her. She has terrible scars on her skin from past hives and blister breakouts. She is a beautiful young girl and she is starting to give up on life. She recently quit school because she could not afford tuition and her medications.

I am hoping Mayo has some answers for her, but I thought that this wise community might also be able to provide some insight.

[chlobo]

Has she been tested for lyme by a lyme literate doctor? Just a thought.

[diamond lil]

Yes, I just asked her. She was tested last year. It was negative.

[Mosaic]

It's actually not all that unheard of, and I'm shocked that none of these experts have diagnosed her as such. Several people are allergic to their own sweat or experience allergic-like reactions to very mild stimuli such as heat, sweat, even water. I'm dreadfully allergic to the sun as well as indoor lights LIKE the sun, and I agree that it's absolutely no fun at all.

FWIW, with proper care, you can build up an immunity to it just like with other allergies, though it is a slow, frustrating process. One thing to note is that it may not show up on a typical allergy test, but you can still be hypersensitive to something and react LIKE an allergy without having a true "allergy". I wonder if that's why none of the experts she has seen has picked up on this already?

What medications is she on? That may be contributing to the problem.

ETA another link: http://en.wikipedia.org/wiki/Cholinergic_urticaria

[ASusan]

MS, lupus, and Mosiac's suggestion of Cholinergic urticaria were my first 3 thougths. I think cholinergic urticaria is the best hypothesis, given what you've posted. I'm a doctor, but I'm not a medical professional.

The only thing I'd add about lupus is that it develops over time, so if she doesn't have the specific lupus markers in her blood for it now, (but does have a postive ANA, for example), she may develop them in the future. (That's what happened to me - weird symptoms (not like your friend's, though) for a couple of years, but non-specific blood tests. Finally, a specific lupus marker showed up - an in really high levels. I don't think I ever met the official clinical dx criteria for lupus. I did acupuncture weekly for 6 months and all evidence of lupus is gone, FWIW.)

This article is great about explaining how lupus develops -

http://www.ncbi.nlm.nih.gov/pubmed/14561795

N Engl J Med. 2003 Oct 16;349(16):1526-33.

Development of autoantibodies before the clinical onset of systemic lupus erythematosus.
Arbuckle MR, McClain MT, Rubertone MV, Scofield RH, Dennis GJ, James JA, Harley JB.

[diamond lil]

Thank you all so much for your helpful replies. I am going to ask my friend if she can tolerate acupuncture. Her finances are not good right now, but I am willing to help her if she thinks it may work.