Discussions By Condition: I cannot get a diagnosis.

No Doctor can tell me what I have and all tests are negative.

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Extremelyworried
  • February 11, 2009
  • 10:06 AM

Since last april I have had a violent pulse which I can feel throughout my body and many many times for 6-15 rapid pulses in one to up to 4 specific areas at a time in my body. The inside (back part behind teeth) of my gums has been white for maybe like 4 months or more. The area where the last molar on each side is white and the gum back there has a gap bewteen the farthest edge of last molar and gums. I have little white patches or dots which appear and disappear and reappear constantly. and each side where the molars are behind the molars has a white piece of skin. Also my throat behind my tongue on both sides is all white. I also have a purple thing about 1 inch long at the back of my tonsils on the right side, and the tonsils are whitish with a small purple dot and the back of my throat, the oropharynx, has some nodule looking thing but no discoloration.
I have severly a dry mouth and regularly need to drink about 2 of the very very large water bottles a day or more. I also have whitish looking areas in roof of mouth. I have had recent tests for white, red blood cell tests, hepatitis, herpes, and every other STD test, Cd4, HIV (multiple times every 3 months for the last 2 years). I recently had a catscan of my neck. I have had 4 ekgs, and saw a cardiologist and had all kinds of sonogram tests, all show nothing wrong. I went to 3 different infectious disease doctors, and an ENT 3 times. No doctor can tell me anything. Every test is negative. I noticed a small whitish thing on the right side of my tongue for the first time in February 1 year ago. It comes and goes now, and slowly is larger but only one side of tongue and thin like like, just started to move onto top right side of tongue close to side.
At this point, I would be get a positive test for something to be able to start treatment before I lose my mind. Please help. THanks.:(:(:(:(

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  • Since last april I have had a violent pulse which I can feel throughout my body and many many times for 6-15 rapid pulses in one to up to 4 specific areas at a time in my body. The inside (back part behind teeth) of my gums has been white for maybe like 4 months or more. The area where the last molar on each side is white and the gum back there has a gap bewteen the farthest edge of last molar and gums. I have little white patches or dots which appear and disappear and reappear constantly. and each side where the molars are behind the molars has a white piece of skin. Also my throat behind my tongue on both sides is all white. I also have a purple thing about 1 inch long at the back of my tonsils on the right side, and the tonsils are whitish with a small purple dot and the back of my throat, the oropharynx, has some nodule looking thing but no discoloration. I have severly a dry mouth and regularly need to drink about 2 of the very very large water bottles a day or more. I also have whitish looking areas in roof of mouth. I have had recent tests for white, red blood cell tests, hepatitis, herpes, and every other STD test, Cd4, HIV (multiple times every 3 months for the last 2 years). I recently had a catscan of my neck. I have had 4 ekgs, and saw a cardiologist and had all kinds of sonogram tests, all show nothing wrong. I went to 3 different infectious disease doctors, and an ENT 3 times. No doctor can tell me anything. Every test is negative. I noticed a small whitish thing on the right side of my tongue for the first time in February 1 year ago. It comes and goes now, and slowly is larger but only one side of tongue and thin like like, just started to move onto top right side of tongue close to side. At this point, I would be get a positive test for something to be able to start treatment before I lose my mind. Please help. THanks. Extremelyworried, Are you tired or lethargic at all?Experiencing any symptops other than mouth symptops (Even the littlest thing...) Also look through this section: http://www.wrongdiagnosis.com/symptoms/mouth_white_patches/causes.htm Lemme know if you find anything that you feel matches.
    diagnosingdarkness 1 Replies
    • February 11, 2009
    • 03:13 PM
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  • no I am not tired or lethargic at all thanks.
    Extremelyworried 1 Replies
    • February 12, 2009
    • 08:26 AM
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  • yes, Like I said I have a violent pulse in several areas of my body sometimes simultaneously sometimes not. My right tonsil is whitish and purple and I have a little pain in my right ear when I chew. I sometimes sweat for no reason, but not night sweats indicative of HIV, and I do not have lots of diahhrea. My doctor initially thought It was candida or something, but I do not nor did have thrush, Anyways, he prescribed antifungal troches, and then diflucan 2 different times and it did nothing, I asked him to give me acyclovir and it cleared the white stuff on my tongue up in a week and a lot of the other white patches, but not the white under the gumss and back of mouth behind tongue,. I have researched and I believe that is white beacuse I have an infection and my white blood cells are trying to fight it. I am going back to my ENT this week to see what he can tell me. I want to order a separate hiv test from a different lab even if i have to pay for it because insurance usually chooses the cheapest lab automatically and will not cover other ones.
    Anonymous 42789 Replies
    • February 12, 2009
    • 08:40 AM
    • 0
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  • I know this will be frustrating to hear--and trust me, I understand (see my thread below yours)--but it looks like you've had a pretty thorough work-up. You've had a number of sophisticated tests, and if something were critically wrong, something--something--would have been abnormal. If your ENT looks at all of that junk in your throat and says its nothing to worry about, let that set your mind at ease. He's seen many more throats than you have in his time! Out of curiosity, did he actually get to see the lesions? Did tell you not to worry about them?Surely the palpitations are exacerbated, if not caused, by your stress and anxiety. Again, try to relax yourself. Treat yourself to a nice herbal tea.
    caoimhin 6 Replies
    • February 12, 2009
    • 10:34 AM
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  • Also, I had a thought--the white bits in your throat--are you describing the "crypts" that sometimes flare up with dead bacteria and other such nastiness? Sometimes I can see them as white rice-sized spots in my throat--usually when I have a throat infection, but sometimes when I feel perfectly healthy. And did you only notice these spots recently because you were paying special attention to your throat recently? Is it possible that they've been there for a long time and you haven't noticed? I'm not trying to patronize you--I'm actually thinking of the things that I know I do when I think something is amiss with my body. For example, I was convinced I had a certain blood disease last month and I subsequently noticed all of these pin-****k petechiae on my upper arms. Turns out they've actually been there for years. I just never examined myself thoroughly enough to notice more than one or two before.
    caoimhin 6 Replies
    • February 12, 2009
    • 10:43 AM
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  • Since last april I have had a violent pulse which I can feel throughout my body and many many times for 6-15 rapid pulses in one to up to 4 specific areas at a time in my body. The inside (back part behind teeth) of my gums has been white for maybe like 4 months or more. The area where the last molar on each side is white and the gum back there has a gap bewteen the farthest edge of last molar and gums. I have little white patches or dots which appear and disappear and reappear constantly. and each side where the molars are behind the molars has a white piece of skin. Also my throat behind my tongue on both sides is all white. I also have a purple thing about 1 inch long at the back of my tonsils on the right side, and the tonsils are whitish with a small purple dot and the back of my throat, the oropharynx, has some nodule looking thing but no discoloration. I have severly a dry mouth and regularly need to drink about 2 of the very very large water bottles a day or more. I also have whitish looking areas in roof of mouth. I have had recent tests for white, red blood cell tests, hepatitis, herpes, and every other STD test, Cd4, HIV (multiple times every 3 months for the last 2 years). I recently had a catscan of my neck. I have had 4 ekgs, and saw a cardiologist and had all kinds of sonogram tests, all show nothing wrong. I went to 3 different infectious disease doctors, and an ENT 3 times. No doctor can tell me anything. Every test is negative. I noticed a small whitish thing on the right side of my tongue for the first time in February 1 year ago. It comes and goes now, and slowly is larger but only one side of tongue and thin like like, just started to move onto top right side of tongue close to side. At this point, I would be get a positive test for something to be able to start treatment before I lose my mind. Please help. THanks.:(:(:(:(Get an appt with a Rheumatologist. These symptoms are similiar to Lupus.
    Anonymous 42789 Replies
    • August 12, 2010
    • 10:04 PM
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