Hi, I will post my story here because to date I am undiagnosed. I am ashamed of certain parts of my story but It all has to be said. In April 2009 I had an Adult experience with a stranger who would have been with many strangers.
2 months later, July 2009, out of the blue, one day while at work I suddenly felt disorientated and dizzy. I also was aware of extra heat and sweating in my crotch region. I would find myself leaning up against the wall. My heart rate started going through the roof with the slightest excersise.
The next day I awoke with a terrible headache and a tiredness I have never experienced. I also was aware of a tingling, almost like movement under my skin, underneath my scrotum. My penis would also have a strange swollen red rash on it If it became erect. I also felt very sick and my stools smelt awful! Of course alarm bells started ringing loudly in my head.. HIV! Or some terrible STD! But no temperature!!
The next day when I awoke It seemed as everything was grey, the light had gone, it was not like before. I was going away to a business function that weekend. I bought a load of flu tablets and headed off. The exhaustion was unbearable. I had to go home early and remember sitting in the airport looking at all the people, they all looked so healthy and alive, i felt so sick and was convinced I had contracted something deadly.
I rushed to the doctor and explained the story, convinced I may have HIV.
He took bloods and some urine and stool sample and sent away. Every day was the same, sick, needing to lie down, blurry vision, shaky hands, terrible headaches, dissorientation and loss of balance. I booked STD clinic tests. The initial bloods came back and showed no white blood cell problems, the HIV tests also turned out negative. The Doctor thought I was being paranoid!! What a pity as his opinion would feedback to all the next specialists in line.
The symptons did not change and life became terrible to manage. I had my STD tests. The only abnormal results showed a bacterial infection inside my pennis. The doctor said this was very common and not serious, she couldnt explain symptoms. I gulped down the medication as fast as possible hoping for the best. The next week no changes!
Next I booked a MRI scan. Came back normal. I can remember waiting for the results, I was feeling so desperate that I wanted the doctor to confirm a problem even if I was terminal, I just needed to find out what this was. Every time a test came back negative the doctors tone sounded more suspicious which was a nightmare for me.
Next I went to see a specialist on rare diseases. She dismissed me as I had no temperature.
5 months had now passed and I felt awful, still with this irritating, scratching feeling under my crotch. The red swollen erection is still here today. Next I had a a lumber puncture to test my brain fluid. No supprise, all ok. So I gave up going to the doctor. Just managed to surrive to date but everyday is a nightmare.
My partner believes me but it is hard for me to be happy. I could run, play rugby, swim and climb before now I can hardly walk fast without being exhausted with a super fast heart rate. I have a constant tingling feeling accross my forehead and have to often stare hard to see something.
Its now August 2010.
13 months on. All the symptoms remain, the exhaustion is worse on some days than others, the tingling is still there.
Any feedback will be greatly appreciated.