Discussions By Condition: I cannot get a diagnosis.

I need help...Chronic infections and strange symptoms...Is this autoimmune?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • July 3, 2009
  • 08:08 PM

Hello, I have head health problems most of my life but now it's coming to a point where I can't take anymore. I am a 21 yr old female and have always been sick as a child with recurring infections. I have been on antibiotics at least 4-5 times a year every year since I can remember. I have always been intolerant to cold with a normal body temperature between 95-97 degrees. When I first started menstruation, I had to start birth control because I never stopped menstruating. In my early teens I had severe intestinal problems with constant diarrhea between 15-30 times a day which occassionally was bloody. A colonscopy was done which showed inflammation. The biopsy was inconclusive, but after becoming anemic and having bloody stools, I was treated with Asacol for possible Crohns. My symptoms subsided when I was 16 and I stopped taking the Asacol. Around then I started having periods where I would become extremely tired and ill and was told that I had reactivated an old case of Mono. I had a lot of bloodwork done which high levels of EBV, when I first had Mono three years prior. I also had severe swelling and inflammation of my sweat glands and had four surgeries to remove cysts and parts of infected sweat glands after being diagnosed with hidradenitis. I still have the problem, but use topical Clindamycin and Minocycline when the glands become infected. I had frequent kidney stones and UTI's around the time I was 17. Many of my urine tests showed white blood cells but when further cultured, showed no growth. I had the frequency to urinate about 20-30 times a day, with a burning sensation. I went to several urologists who could not figure out what was wrong, but said that one of my kidneys was swollen. Eventually when I was 20, I was diagnosed with Interstitial Cystitis by a gynecologist and treated with Elmiron, which helped a little. I still was urinating every 45 minutes, but I decided to just deal with the problem and did not want to take more medicine. I still was severely cold all of the time and had many different infections and had to use antibiotics for kidney infections, sinus infections, and bronchitis. I eventually ended up with pseudomembranous colitis or CDIFF?, from the overuse of antiobiotics. I was extremely ill and had stomach swelling, inability to digest foods, and was treated with weeks of Phlagyl and was unable to take antibiotics for months. I have had a lot of problems with thrush and yeast infections from using antibiotics, but I can't go more than a few months with some random infection happening. I also see a neurologist for migraines and fainting issues which are thought to be related to a head injury.

Recently, my symptoms have become much worse. In August of last year I transferred to a new college and started having more strange and worse problems. I started having small pustules with clear discharge leading to peeling and cracking of the skin ONLY ON MY HANDS. This problem has only been on my hands and became worse to the point where I had to keep my hands bandaged at all times and could not use them. The smallest hand movements would cause the skin to crack open and bleed. I was diagnosed by a dermatologist with Dyshidrosis and I was treated with Protopic which did nothing until I ended up with a finger infection last December, where the doctor I saw could not believe what my hands looked like. She stated that the Protopic clearly was not working and I was put on super potent steroid ointment. I am unsure if this is really dyshidrosis but I am not responding to any treatment for dyshidrosis. I have had to use super potent steroid topically everyday just to keep the problem stable. The finger infection at the tip of my finger caused my finger to swell and did not get any better after two incision and drainages and two courses of antibiotics. Over the past year I have had bronchitis twice, two or three ear infections, pneumonia, and the finger infections, thrush and candida problems, my skin problems, and my eye problems. I had to go to urgent care last week because my finger became so swollen and I was told I had a connective tissue infection and put on very strong antibiotics which are making me very sick. I went to a dermatologist the next day and received a biopsy of my hand and I do not know the results yet but no doctor knows why I am not responding to treatment. My hands and feet become so cold that I can not use them or feel them and they often become blue or red. I start shiver when I am in an environment less that 80 degrees. Since December I have been physically exhausted and started sleeping 14-16 hours a day. I have started having memory problems and extreme dry eyes, dry mouth, and dry skin. I have very low blood pressure, but an extremely high pulse.I have scratched my eyes with my contacts, leading to me being unable to wear contacts and using steroid eye drops that aren't helping. I have started having extreme aches in my hands, shoulders, hips, neck, and chest. I have to take Advil almost everyday. Everyone thought I had a thyroid problem, but the blood work is normal. I was tested for auto-immune problems 6 years ago and all the blood work showed was inflammation. I currently have nearly perfect blood work, but I am going to have a complete blood work up to test for autoimmune problems and have been referred out to a rheumatologist.

Can anyone help me or suggest a reason for frequent infections, extreme dry eyes, eczema like problems on my hands, intolerance to cold, my hand becoming numb, excesses fatigue, and joint problems??? I feel like I'm dying and I'm worried no one will ind out what is wrong.

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