Discussions By Condition: I cannot get a diagnosis.

No diagnosis yet...been 4 months..help

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: MesseD
  • May 30, 2008
  • 08:23 PM

Hello everyone...I'm hoping someone can help me find out what the ***l is wrong with me...I beg of you.....
First off I am not allergic to anything, haven't had any medical problems, or stds.
I am a 20 yr old male. I had been a smoker for about 3 years (pot and cigs), I quit cigarettes this last December and used pot as a crutch to get away from them. The month after I had quit cigs...my girlfriend dumped me for some guy who just got out of prison... and soon after that (all in January) said she had tested positive for herpes. So I went and got myself tested for everything and it all came back clean.
Around February I started getting a sore throat, random headaches, random fevers that came and went. I went to the Dr and he said my spleen was swollen and he thought it could have been mono or cmv (both tests came back negative). I started to notice I was spitting up more and more of this black brown colored stuff in my spit.
Within a month, my spleen was no longer swollen...but I was having abdominal pains and my throat was red and irritated, along with headaches and diarrhea(diarrhea went away after a few days, and the headaches would be more severe on some days then on others). Also a weird lump appeared on my hard palate on the right side of the roof of my mouth and right behind that the soft palate has been swollen as well (it is not discolored).
Anyways, I went back to the doctor and over the next few months, had first taken a round of antibiotics(didn't do much), did a round of antivirals(I think that only got rid of a canker sore that was growing on my lip..). I had a chest x-ray that came back clean. My Dr then said he thought it might be a sinus infection of some sort, and I should probably either get a ct scan of the sinuses or just do another round of antibiotics. I decided both. ..(during this whole time I had visited 2 ENTs and they looked down my throat with a laryngeal mirror and said my throat looked ok)
So I got my CT scan results and my doctor said the only thing wrong was that I had a cyst in my sphenoid sinus and my right cheek sinus thing was slightly enlarged...but that it wouldn't be causing my problems. So now he thinks I should go see an infectious disease specialist because he thinks it isn't anything that is common.
During all of this.. most of my symptoms have died down except for throat pain/discomfort when I swallow(has worsened), the gunk I have been spitting up is worse then it was(I don't have a cough....I just hack the crap out of my throat many times a day). My throat has a red rash look to it and has tiny blisters all at the back that swell when I eat(it hurts!). I severely doubt it is reflux as I have taken antacids and slept upright with no effect. My lymph nodes in my neck on the right side are swollen, probably my armpit ones are swollen. The left side of my upper throat is where I feel the swallowing pain/discomfort. I have quit smoking pot a month and a half ago because every time I would smoke it would amplify my pain. Every day this gunk is coming up...I'll add a picture since a picture is worth a thousand words. Sometimes it's more blackish. Usually comes up mixed with saliva and has multiple globs of it.
I have been tested for the following:
Strep 2 times both negative
had a sed rate blood test...only my neutrophil count was slightly high
the std tests...( I am retesting in a few days just to make sure)
x-ray of chest was clean
ct of sinuses ...not a big problem
The gunk I am spitting up has been tested to see if it was blood twice...it's not blood. It's too much and weird to be tar from smoking...might be a mixture of that and something else....maybe a fungus???
Current symptoms:
My upper throat has a grinding/painful feeling when I swallow(on the left side)
My throat has a red rash look all around the back with very tiny blisters I can usually only feel, not see.
Sometimes when I eat my throat gets swollen and painful...no matter how mild the food.
minor chest pain...could be stomach pains? and pains down center of my chest...might have esophagitis combined with something else.
I have developed a painful canker sore?? on the underside of my tongue.
I hack up plenty of that strange black brown gunk. In certain light...it is almost greenish.
...sometimes my heartbeat can be felt all the way up the left side of my neck throbbing pretty loudly

I thank everyone who has taken the time to read this...hopefully I can finally start getting better soon with help from you... much much much appreciated

Please...anyone who has a good idea of what it could be...let me know what you think...I don't have insurance and this is becoming very costly and painful.
I just got my GED and this has taken over my life.:(

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6 Replies:

  • Hi'I'm not sure...I have lyme disease, but at a very chronic stage...Your symptoms looks like a beginning, and i would tell to be sure, that if you soon start to have memory problem, brain fog, anxiety, pain in muscles or articulation, numbness, then go see a LLMD, specialist doctor for lyme, infectious doctor denied too much lyme...and the test used are not good..it is proved it's just a question of time to change.If you want more informations, look at lymenet forum ok...http://flash.lymenet.org/scripts/ultimatebb.cgi?you'll can see the symptoms, help, and know what they think. If you think it could be this, they help to find a doc in your area...I have lyme and don't remember a tick ok. It is so small that you don't see it. Bye and good luck!Fannie
    Fannou 111 Replies Flag this Response
  • Hi I'm wondering if this could be a form of pemphigus? This causes blisters in the mouth and throat/oesophegus, pain when eating and coughing up dark coloured stuff. I think its normally associated with older people though?Anyway, just a thought and i hope you get an answer very soon.
    Anonymous 42789 Replies Flag this Response
  • It definitely sounds like you have an infection of some sort. I saw a Mystery Diagnosis where a woman had a cyst on her spleen that they thought was lymphoma and didn't find until they were taking her spleen out as a lymphoma treatment- and she 's a nurse! See if you can find someone who has a DVR who can look for that episode for you. Also, my boss went a whole year with doctors doing blood cultures before they finally figured out what her infection was. By that time she had to have open heart surgery. My point is, don't wait. Cultures take time to grow and it could take a long time and be really expensive. I suggest buying a health discount card. For about $20/month you'll get a discount on all of your visits and tests. It's not as good as insurance but it's better than nothing. If you can get on Medicare, do that too. This is important and you deserve to be treated. I am also dealing with a mystery illness but with very different symptoms. But it might help if you look into Black Mold Poisoning too. I'm pretty sure one of the molds that are profiled on this site http://www.mold-help.org/content/view/478/ had pictures of people with sores in their mouths and descriptions of throat growths. I would definitely get to an Infectious Disease Dr in any case as soon as possible.Hope that's helpful.
    dizzy lizzie 192 Replies Flag this Response
  • I just found this...might be worth taking to an Infectious Disease Dr.http://www.doctorfungus.org/mycoses/human/paracocci/paracoccidiomycosis.htmParacoccidioidomycosisSynonymsSouth American blastomycosisDefinitionParacoccidioidomycosis refers to the endemic disease produced by Paracoccidioides brasiliensis. The infection is found beginning at about 23 degrees North latitude in Mexico and extends southwards to Argentina. It is not seen in Chile and the Caribbean Islands. The ecologic niche for P. brasiliensis remains obscure and the fungus has only been isolated four times from soil . Inhalation of conidia is presumably the route of acquisition. Primary infection is asymptomatic in most cases. The fungus can remain dormant for years within lymph nodes to appear later probably in relation to some type of immunodeficiency . Interestingly, paracoccidiodomycosis affects primarily men (Men/women ratio 15:1) and people older than 30. A juvenile form with a peculiar poor prognosis occurs rarely . The adult form usually manifests with painful ulcerated lesions in the mouth. Other clinical presentations include cutaneous lesions, lymphadenopathy, dysphagia, and hoarseness . Finally a clinical picture identical to pulmonary tuberculosis (fever, weight loss, and productive cough with blood-tinged sputum) may also occur .
    dizzy lizzie 192 Replies Flag this Response
  • Thank you all for responding, I appreciate it so very much. I will definitely bring those up next time I'm at the Dr.A quick update...I have been having lower chest pains on my left side more often....I am getting worried about some brown spots in my mouth, one is on the front bottom of my gums(has some small white scuff looking marks on them too), the other is more at the back of my mouth, left of my uvula near where I had a blister pop(they do not wipe off)...Mouth still looks horrible and rash-like with tiny blisters as usual...The sore on the under-side of my tongue(looked canker sore-ish)..is eroding weird...sorta like a crescent shape erosion.When I went and mowed the lawn my heart beat was felt all the way into my head(while my head was throbbing my vision was sort of red and hazy) and I got more of the chest pains(painful rotting feeling) and spit up more brownish black crap...my left testicle gets sore randomly up into the lymph nodes on the left side nearby...my stomach area has discomfort pains often.headaches are usually on the right side of my head..near my temple and at the back of my head right side(if it goes to the left side it is around the temple area only usually)New symptoms: strange sharp pain in between my front left teeth gum area...feels like someone is stabbing me with a pin for a minute or two in that one spot.Similar sharp pain at the tip of my index finger tip of nail area...Under my right eye..the skin had a painful feeling to it..almost burning when touched...looks normal though...Please do not hesitate to respond if you think you might know of something that is likely or is a possibility.Thanks again...I need to stop this from getting worse, if I can...
    MesseD 1 Replies Flag this Response
  • The new symptom you have is all Lyme symptoms. Your doctor won't know and will tell u it's crazy. You must see a LLMD, read again my stuff and Blaze stuff ok...Fannie
    Fannou 111 Replies Flag this Response
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