Discussions By Condition: I cannot get a diagnosis.

Undiagnosed mystery symptoms resulted in persistent changes

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: DaveWestbrook
  • December 11, 2009
  • 10:13 AM

Intro:
This all started to happen around March of this year, so I will do my best to recall any relevant information. I apologize in advance for the long post, I've been wondering about this for awhile and I'd like to be as descriptive as possible in case anyone recognizes a connection between these symptoms. I put alot of time into this post (2.5 hours) to hopefully make it as easy to read (I bolded the main points so you can skim over it) as possible, and I would appreciate the same respect, effort and care in the replys. Please don't let this mammoth of a post prevent you from reading it. Even if you just skim it, that increases my chances of finally getting some answers that no doctor could provide me with and I would really appreciate the input. Thanks in advance for your time!:D



Relevant background:
I am an otherwise healthy, average american male college student.
I had (what started as) protected sex early March 2009 with a girl I had met and hung out with a few times. The condom ended up breaking, and we stopped as soon as I realized it was no longer intact. I was worried about the risk of pregnancy, but she assured me it was low because we didn't finish and her period was just ending (thus I was probably exposed to her blood).

I believe this was on a Friday or Saturday at the beginning of March. Two days after that I woke up, noticing that I felt like I had a cold coming on, and went about my normal morning routine of a shower, when I noticed I had what can best be described as a zit on the penis head, a little above where the shaft meets the head. Naturally I freaked out because that is such an unnatural spot to have a zit. It was extremely painful and ended up popping a few days later. Like any other guy who notices something wrong down there, I immediately assumed the worst: STD.

Physical symptoms:
Now the time frame and sequence of events are a little hazy but I will do my best to recollect them. I never did have any other blisters ulcers or burning appear, but I came down with a very intense sickness that seemed to last about three weeks to four weeks. I mainly had flu-like symptoms: profound exhaustion, postnasal drip, intense chills/muscle aches, and an extremely foggy head. What was strange about this was that it would seem to semi or fully resolve for a day or two and then out of the blue it would come back very rapidly. One day (Over the course of an hour) I went from sitting in my dorm room relaxing and content to feeling intensely cold and achey. I also noticed a moderate to high abdominal pain right below my ribcage. I only got it a handful of times for 20 minutes to and hour and a half at a time, but it often was intense enough to where I could not stand up straight.

If this whole mystery sickness thing wasn't enough, I began to feel extremely paranoid and stressed out because I had never had anything worse than strep throat or the flu in my entire life. I honestly went insane for a couple weeks obsessing over trying to diagnose myself, as I lacked medical insurance and I really didn't want to fill my mom in on my whole scenario just yet. Then I began noticing changes in my skin and mouth, which sent my manic hypochondria through the roof.

Another strange symptom occurred for a couple of days where, immediately after I had eaten any sort of meal, my vision would get very strange and my mind would feel different, similar to the motion delay you get when you've had a few drinks, with an added psychedellic effect of flowing patterns and sparkles in my periphery.

Skin/mouth changes:
Again, I can't remember the exact timeframes on when these changes occurred, but it was approximately in that same three week time frame, and they occurred fairly rapidly as well.

Genital changes:
I believe the first thing I noticed was a mildly swollen cluster of tiny red dots where that initial zit had appeared which led me to checking out the area multiple times per day. Then my genitals became very dry and itchy, with a red, lacey sort of rash appearing on my scrotum. I noted a sudden increase (over a 24 hours period) in fordyce spots, both on genitals and lips, and sebaceous prominence, which I always had before but was hardly noticable, and the appearance of pearly penile papules.

My penis had become extremely wrinkled, and slightly discolored in certain places. Most notably, a couple of whitish grey patches appeared on the shaft. Skin seemed to thicken or puff up below the tip with a sponge-like appearance, more noticably on the left side. When stretched, this skin was much more sensitive to pain than the rest. Part of the tip seemed to swell up around some small circular white patches of skin. Developed a raised fleshy plaque on my shaft, which is soft, slightly lighter than my skin, and has an uneven, cauliflower type top. It seemed to resemble a wart, though after many hours of looking up all the HPV pictures I could find, I could not find any that closely resembled what I have. Upon stretching that plaque a deep purple bump-like structure appears, similar to the way a vein looks.

Skin changes:
Over this entire period my skin felt itchy and generally dry all over. I developed what I believe were hives, or some kind of intensely itchy and flakey rash, that was severe enough to where when I took off my black shirt, the inside looked like it was sprinkled with flour. I also noted a rapid development a rash a consisting of multiple round slightly raised white papules which occurred on my back, neck, and chest. Upon stretching my skin, papules become more prominent and jagged, linear plaque-like lines appear running vertically up the affected area with a very fine red, lacy pattern between the lines.

Oral changes:
My mouth had also started to change. I had developed some white patches with a dark purple surrounding area on the lateral undersides of my tongue, which seemed to be roughly in the same spot on both sides. It was not thrush as I could not scrape it off. The inside of my lips develped a series of hard, whitish greyish bumps that are extremely apparent upon the stretching of the lip. My gums developed a white/grey rough sandpapery like appearance directly above the tooth for a quarter of an inch, and above that the gum was a dark red. The roof of my mouth had also turned white.

Hand/nail changes:
My hands had developed some white, slightly raised papules on the skin above the joints. I believe it was around 3-4 weeks after I began feeling sick that my nails appeared very pale, and deveoped Terry's Nails: deep red, lateral bands across the ends of my nails appx. 1/16 in. in thickness. These lasted roughly 5 to 6 months on my fingernails and still appear occasionally, but more often on my toes. Also, my nails (almost entirely exclusive to my left hand) began to recede. Basically, the nail started to lift up from the nail bed

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6 Replies:

  • Attempts at diagnosis:During the first few days I was so scared and anxious that I told my mom about my situation. She was initially angry but almost immediately she became very understanding. We saw a clinic doctor (of seemingly doubtful credebility) and a university campus doctor regarding my initial zit-like outbreak on my genitals. Both of which said that it didn't look like herpes which was my main concern at the time. Appx. two weeks after the initial event, and well into the physical sickness we saw two more doctors. The first had become defensive, and even mocked me when I suggested my theories on what was wrong with me. Upon showing him the rash on my back, he shrugged it off as acne scarring. The second, my Gp of six years, thought I had rheumatic fever, a complication of strep throat (which he diagnosed due to the skin changes occuring on the joints of my hands). I was put on antibiotics which did not seem to help at all. I also saw my dentist for a routine tooth cleaning, but did not mention any of my oral changes. She did not mention the appearance of my gums, or anything else. The only real test I had was a generic blood test from my GP, all others were purely visual inspection and the usual procedures such as blood pressure etc. The test came back, and I can't remember the exact results, but I did not need to go back in for a followup so I assume everything was within a reasonable range. Appx. six months after initial sickness most of the genital skin changes remained. I was tired of obsessing over them, and started seeing a new girl so I saw a dermatologist before this girl and I took things any further. My main concern was the possibility of HPV due to the fleshy wart-like plaque and white patches mentioned earlier. Hhe looked me over and said everything "looked normal" and that he could guarantee me that I didn't have HPV (it most certainly did not look like that before this whole ordeal). Chronic changes:After roughly three to four weeks most of my physical sickness subsided, yet here I am 9 months after the fact, with persistent changes to my body. Genitals:Still very wrinkled, white patches, fleshy plaque and spongy appearance all remain. White patches developed a little more, fleshy plaque seems to have stopped developing. Skin still seems thin and sensitive in areas. Sebaceous prominence and fordyce spots have increased slightly in some areas (though not at the initial rapid rate) and decreased in other areas. Rash and dryness are gone. Occasional pain in tip of penis.-White patches seem to suggest a lichenoid type condition, most closely resembling lichen planus and lichen sclerosus Skin:Rash/papules on upper body has continued to develop slightly, but not at an alarming rate. Mouth:Strange white/grey bumps are still there, but seem to be a little better as I can't feel them with my tongue as prominently as I once could. White, lacy unilateral spots under tongue have grown in size. Gums still retain white/grey sandpapery appearance, but to a lesser degree.-Spots under tongue resemble a lichenoid type condition Hands:Small papules on skin over joints are pretty much gone. Terry's nails occur occasionally, most often on my toe nails rather than finger nails. Nail recession has slowed down alot, but still occurs to a slight degree.-Terry's nails and nail recession suggest liver or kidney trauma. Conclusion: Even after nine months my body has not been the same. I don't let it bother me as much as it once did, but I still do wonder about what the heck I got, and whether or not my health is in Jeapordy. If anyone has any experience with any of these symptoms I would love to hear some input. Thanks for putting up with that behemoth of a post =D
    DaveWestbrook 1 Replies
    • December 11, 2009
    • 10:13 AM
    • 0
    Flag this Response
  • Attempts at diagnosis:During the first few days I was so scared and anxious that I told my mom about my situation. She was initially angry but almost immediately she became very understanding. We saw a clinic doctor (of seemingly doubtful credebility) and a university campus doctor regarding my initial zit-like outbreak on my genitals. Both of which said that it didn't look like herpes which was my main concern at the time. Appx. two weeks after the initial event, and well into the physical sickness we saw two more doctors. The first had become defensive, and even mocked me when I suggested my theories on what was wrong with me. Upon showing him the rash on my back, he shrugged it off as acne scarring. The second, my Gp of six years, thought I had rheumatic fever, a complication of strep throat (which he diagnosed due to the skin changes occuring on the joints of my hands). I was put on antibiotics which did not seem to help at all. I also saw my dentist for a routine tooth cleaning, but did not mention any of my oral changes. She did not mention the appearance of my gums, or anything else. The only real test I had was a generic blood test from my GP, all others were purely visual inspection and the usual procedures such as blood pressure etc. The test came back, and I can't remember the exact results, but I did not need to go back in for a followup so I assume everything was within a reasonable range. Appx. six months after initial sickness most of the genital skin changes remained. I was tired of obsessing over them, and started seeing a new girl so I saw a dermatologist before this girl and I took things any further. My main concern was the possibility of HPV due to the fleshy wart-like plaque and white patches mentioned earlier. Hhe looked me over and said everything "looked normal" and that he could guarantee me that I didn't have HPV (it most certainly did not look like that before this whole ordeal). Chronic changes:After roughly three to four weeks most of my physical sickness subsided, yet here I am 9 months after the fact, with persistent changes to my body. Genitals:Still very wrinkled, white patches, fleshy plaque and spongy appearance all remain. White patches developed a little more, fleshy plaque seems to have stopped developing. Skin still seems thin and sensitive in areas. Sebaceous prominence and fordyce spots have increased slightly in some areas (though not at the initial rapid rate) and decreased in other areas. Rash and dryness are gone. Occasional pain in tip of penis.-White patches seem to suggest a lichenoid type condition, most closely resembling lichen planus and lichen sclerosus Skin:Rash/papules on upper body has continued to develop slightly, but not at an alarming rate. Mouth:Strange white/grey bumps are still there, but seem to be a little better as I can't feel them with my tongue as prominently as I once could. White, lacy unilateral spots under tongue have grown in size. Gums still retain white/grey sandpapery appearance, but to a lesser degree.-Spots under tongue resemble a lichenoid type condition Hands:Small papules on skin over joints are pretty much gone. Terry's nails occur occasionally, most often on my toe nails rather than finger nails. Nail recession has slowed down alot, but still occurs to a slight degree.-Terry's nails and nail recession suggest liver or kidney trauma. Conclusion: Even after nine months my body has not been the same. I don't let it bother me as much as it once did, but I still do wonder about what the heck I got, and whether or not my health is in Jeapordy. If anyone has any experience with any of these symptoms I would love to hear some input. Thanks for putting up with that behemoth of a post =D Response: I'm not a doctor. I read your post-every word. From the sounds of your symptoms right down to the flu like symptoms, it sounds like you have genital herpes, and possibly genital warts(caused by HPV)the cauliflower thing gave it away. Perhaps the reason your flu like symptoms are fluctuating and your physical symptoms (genital and others)remain is because you have this virus. There can be dormant times when there doesn't seem to be any symptoms and then flare ups when the symptoms reappear. You are contagious at either time to your partner but more so when you have visible symptoms(genitals). There is no treatment for the virus, but if you have a partner it may be worth your while and his/her's to get something to treat the symptoms(genitals most specifically), so you're not passing it on. Perhaps instead of trying to track down a doctor for diagnosis you could just ask for something to treat the symptoms because you suspect it is herpes. If the doctor refused to write a prescription because they didn't diagnose you then look for some kind of over the counter remedy. Best to ask a pharmacist. Then all you can do is see if it helps. If it does not help your symptoms then I would keep asking for help to find out other possible causes. This is just my opinion. Hey I hope you find the answers you need.-Amy
    CommonSenseAmy 1 Replies
    • December 12, 2009
    • 02:17 AM
    • 0
    Flag this Response
  • Yeah, completely agree...it screams GH. But it's not. The upper abdominal pain at the beginning of your story made me more interested then anything else. He's not a female, he doesn't have fallopian tubes. I think it's something completely different. I'm wondering if it was something triggered from your sexual encounter with that woman, and your system has become immuno comprimised. My suggestion. Blood work, ultrasounds, etc etc etc. A skin disease or STD, regardless of what it is, is not something to leave alone. Clearly the reactions that you have had, have made you have systemic effects (it's spread throughout your body)...and this needs to be addressed. More-so, herpes tends to like it's 2 spots, the mouth and the genitals. Herpes doesn't because systemic in a way where it makes your whole body become itchy, and gives sores, and changes finger nails. Whatever has happened has affected your entire system. Finger nail changing is a result of organ failure. CLubbing of the finger nails is related to the heart. So if yours are similar to Terry's, then I would suggest further tests on your liver/etc.One thing you need to try and remember when talking to physician's, and such of the life....Unless a doctor has diagnosed you, don't diagnose yourself. I know it's hard because we read lots of stuff online. But it's easier to diagnose if you just tell the symptoms, and not what disease/dysfunction that you think you may have.You definitely have a challenging case. I wish you much luck.
    Anonymous 42,789 Replies
    • December 13, 2009
    • 07:49 PM
    • 0
    Flag this Response
  • my first thought is omg!!! I have never come across another person with the same symptoms as me before!! I understand how stressful it is not knowing what is wrong with you, I was also in perfect health before this happened to me. I had unprotected sex so I think it may be related to that? However, I am severely needle phobic so can have no tests done :(, I really hope you luck with finding out what is wrong with you, also if you do then please let me know!! :)
    Gemz109 1 Replies Flag this Response
  • ur symptoms r suggestive of INFECTIOUS MONONUCLEOSIS ..get a paul bunnel test done n let me know the results .. m a medico n i can definitely help u .. don worry .. god bless :)
    arjun4mb 80 Replies Flag this Response
  • believe it or not, men can get yeast infections too. yeast infections caused by candida (also causes thrush) can spread throughout the entire body and affect multiple organ systems in a variety of different ways. While not a pleasant idea, it is treatable and you may want to bring it up the next time you visit your physician, even though systemic candida infection in a young, otherwise healthy individual is quite unlikely, but not entirely unheard of.
    gregtfish 67 Replies Flag this Response
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