I hope you’ve heard it all because here goes! 3 years ago I started to hear a popping sound in my head and one of my eyes became bloodshot. The sensation was similar to a bloop, bloop, bloop in my head. Around the same time I started to have shortness of breath and occasional heart palpitation. I went to ER, they did a CT and lung X-ray. They could not find anything and said I was fine. I recently got a copy of the report and it does list “ethmoid and sphenoid sinus disease”. So I went along for 3 years never feeling right. Light headed, some dizziness, occasional black floaters, etc. About 6 wks ago stated to feel really, really, bad. Right now I’m having a really hard time getting diagnosed. If it is neurosyphilis are there any indications on a CT scan that the doctors shoud look for. My RPR results were non-reactive but I did have an indeterminate HIV screen. One band reacted gp160. 2 subsequent HIV tests were negative.
I look fine and CBC with diff is normal. It feels like the doctors think I’m crazy but I know there is something really bad going on. I’m going back to the doctor tommorrow and have got to try to convince them to do a FTA-ABS test even though my initial screen for syphilis was negative and according to cbc there is no sign of infection, so they won’t do a spinal tap.
As far as the syphilis goes, I used to get little pimple looking things but usually only one at a time. I also use to get a very small cold sore in the corner of my mouth. I haven’t had those for a few years now. I don’t remember getting and type of rash on my body and I have never had anything like the nasty pictures of syphilis you can find on the internet.
One last thing I did get them to X-ray my neck. I have pain and stiffness. They said i have arthritis in my neck. I think it’s the syphilis moving into my bones. I can feel it throughout my body and possibly other organs. Any suggestions to make the doctors believe me?
Thanks for listening
Dr. Joshua’s Answer:
You describe various symptoms and signs that are not specific to any disease and many of these symptoms can be unrelated to each other. By your description alone I will not make any guesses at the diagnosis. I do not have a complete history and I am not able to examine you physically.
One symptom that caught my eye is the original symptom of the sound in your head and bloodshot eye. If you continue to have this symptom, neurosurgical or neurological consultation and possibly further head imaging may be necessary to exclude brain blood vessel disorders such as a caroticocavernous fistula or dural AV-fistula.
In any case, if you continue to have neurological symptoms such as dizziness, lightheadedness and so on, it may be necessary to see a neurologist.
As for the syphilis and HIV infection status, you should ask your doctors to provide you with a clear answer: Are they satisfied that these infections have been completely excluded? I cannot answer this question based on your descriptioin of the results.
One thing worth mentioning is a borrelia test (Lyme Disease), if a chronic infection of the nervous system is suspected.
The most important point that I can make is to discuss your concerns with your doctors, ask them to explain to you what they are thinking. It may well be that you have been quite sufficiently examined, but your doctors have failed to inform you properly, or there may have been misunderstandings. You could write down the specific questions you have, and ask for a clear answer. This will help your doctors to provide you with the information you need. You can also ask them about getting a second opinion if you are not satisfied with the answers.
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