Discussions By Condition: Autoimmune Disease

Possible Anti-immune disease Help??

Posted In: Autoimmune Disease 3 Replies
  • Posted By: trackhead26
  • September 12, 2007
  • 07:24 PM

When you first hear the symptoms you will start to think its Herpes but as I continue you will see why it is unlikely. I'll start with the symptoms: Sores in various places, the ones on the penis start as what looks like acne, a group of about 6 bumps filled with a watery liquid. When they pop they turn into an ulceration which spreads over the head of the penis and even along the base sometimes. Ulcerations beging to appear inside my mouth, they do not start as blisters and look like canker sores. These sores affect the inside lining of the cheeks, and even my throat and tongue. They move on to my lips and at the worse have completely removed all the skin from my top and bottom lip until eventually crust over. I also get anal sores at the same time and blisters with a dark in the center appear anywhere on my body, on my hands, my arms my feet even on my chest and one time right in the corner of my eye. A couple of doctors have thought that it could be Bechet's Disease but there is no straight out test for that. The first time it happened about 2 years ago, I was first given acyclovir which did nothing and then I was given valtrax and it still continued to get worse. Finally I was admitted into the hospital s I was unable to eat or drink due to the pain from all the ulcerations in my mouth along with no skin being on my lips. They gave me a saline solution and antibiotics for 3 days until my lips started to crust over and I was able to eat soft foods again. They were unable to tell me what caused it. The blisters on my skin gradually skrink down and disappear leaving a dark brown scar. My lips eventually regrow skin as well as my penis which loses the majority of its skin on the head. There is no pain from urinating except that caused by the urine touching the open skin on the outside. Pus does seem to come out of the open wounds. Any insight would be nice, I would like to know what this thing is. I'm 27 years old and african american, born in NC and raised in NY. I've never been out of the country. I'm married and whatever it is it isn't contagious as my wife has never been affected by it.

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  • When you first hear the symptoms you will start to think its Herpes but as I continue you will see why it is unlikely. I'll start with the symptoms: Sores in various places, the ones on the penis start as what looks like acne, a group of about 6 bumps filled with a watery liquid. When they pop they turn into an ulceration which spreads over the head of the penis and even along the base sometimes. Ulcerations beging to appear inside my mouth, they do not start as blisters and look like canker sores. These sores affect the inside lining of the cheeks, and even my throat and tongue. They move on to my lips and at the worse have completely removed all the skin from my top and bottom lip until eventually crust over. I also get anal sores at the same time and blisters with a dark in the center appear anywhere on my body, on my hands, my arms my feet even on my chest and one time right in the corner of my eye. A couple of doctors have thought that it could be Bechet's Disease but there is no straight out test for that. The first time it happened about 2 years ago, I was first given acyclovir which did nothing and then I was given valtrax and it still continued to get worse. Finally I was admitted into the hospital s I was unable to eat or drink due to the pain from all the ulcerations in my mouth along with no skin being on my lips. They gave me a saline solution and antibiotics for 3 days until my lips started to crust over and I was able to eat soft foods again. They were unable to tell me what caused it. The blisters on my skin gradually skrink down and disappear leaving a dark brown scar. My lips eventually regrow skin as well as my penis which loses the majority of its skin on the head. There is no pain from urinating except that caused by the urine touching the open skin on the outside. Pus does seem to come out of the open wounds. Any insight would be nice, I would like to know what this thing is. I'm 27 years old and african american, born in NC and raised in NY. I've never been out of the country. I'm married and whatever it is it isn't contagious as my wife has never been affected by it. Except for the pus, that sounds a lot like some type of either pemphigus or pemphigoid, which are autoimmune diseases. So is If you have that, and then the sores became infected, maybe that would account for the pus. I suggest you go to the website of the Internation Pemphigus & Pemphigoid Foundation, www.pemphigus.org, click on both Pemphigus and Pemphigoid on the left side, and on their various subheadings, and see what you think. On the other hand, did they discard the idea of Behcet's Disease just because there's no test for it? That isn't a reason not to consider it. If you Google that disease, you'll find out a lot, including how to get diagnosed and treated, if you have it. I don't know much about Behcet's, but pemphigus and pemphigoid are usually treated by dermatologists The trouble is, you can't get help from just any dermatologist, because many have never seen a case. If you think you have one of those diseases, you may want to use the Pemphigus & Pemphigoid Foundations's referral service. If none of those ideas turn out right, please don't give up. Obviously you're having a terrible time. There has to be a reason. Keep searching till you find it.
    AgnosticJaz 23 Replies
    • October 5, 2007
    • 01:25 AM
    • 0
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  • When you first hear the symptoms you will start to think its Herpes but as I continue you will see why it is unlikely. I'll start with the symptoms: Sores in various places, the ones on the penis start as what looks like acne, a group of about 6 bumps filled with a watery liquid. When they pop they turn into an ulceration which spreads over the head of the penis and even along the base sometimes. Ulcerations beging to appear inside my mouth, they do not start as blisters and look like canker sores. These sores affect the inside lining of the cheeks, and even my throat and tongue. They move on to my lips and at the worse have completely removed all the skin from my top and bottom lip until eventually crust over. I also get anal sores at the same time and blisters with a dark in the center appear anywhere on my body, on my hands, my arms my feet even on my chest and one time right in the corner of my eye. A couple of doctors have thought that it could be Bechet's Disease but there is no straight out test for that. The first time it happened about 2 years ago, I was first given acyclovir which did nothing and then I was given valtrax and it still continued to get worse. Finally I was admitted into the hospital s I was unable to eat or drink due to the pain from all the ulcerations in my mouth along with no skin being on my lips. They gave me a saline solution and antibiotics for 3 days until my lips started to crust over and I was able to eat soft foods again. They were unable to tell me what caused it. The blisters on my skin gradually skrink down and disappear leaving a dark brown scar. My lips eventually regrow skin as well as my penis which loses the majority of its skin on the head. There is no pain from urinating except that caused by the urine touching the open skin on the outside. Pus does seem to come out of the open wounds. Any insight would be nice, I would like to know what this thing is. I'm 27 years old and african american, born in NC and raised in NY. I've never been out of the country. I'm married and whatever it is it isn't contagious as my wife has never been affected by it. Please see many neurologist as I have Bechet's disease and this sounds just like it. Prednisone and Colchine are the meds needed to control symptoms. The fact that anti viral medication didn't work and if you have repeat outbreaks please see a neurologist trained to diagnose the symptoms. I too had never been out of the country, was married and had similar symptoms. If it is Bechet's disease the outbreaks will continue. There is also the American Bechet's Disease Society which can be of comfort. It is not contagious and quite rare. Keeping it in check is the answer and I can relate to your pain.
    Anonymous 42789 Replies Flag this Response
  • Please see many neurologist as I have Bechet's disease and this sounds just like it. Prednisone and Colchine are the meds needed to control symptoms. The fact that anti viral medication didn't work and if you have repeat outbreaks please see a neurologist trained to diagnose the symptoms. I too had never been out of the country, was married and had similar symptoms. If it is Bechet's disease the outbreaks will continue. There is also the American Bechet's Disease Society which can be of comfort. It is not contagious and quite rare. Keeping it in check is the answer and I can relate to your pain. Not only do you want to see a neurologist but you must also see a Rheumatologist. They specialize in autoimmune disorders and will be of assistance. Bechet's disease is very rare in the United States, but getting treatment for the symptoms early as possible is the best way to go. Very few doctors are familar with this autoimmune disease. The more education you can give yourself about it the better you will be in the long run.
    Anonymous 42789 Replies Flag this Response
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