Undiagnosed Lymphatic Problem - Any Ideas?

[monkeycircus]

I am a 31 yr old male. healthy....normal weight.

2 years ago i discovered some swollen lymph nodes in my groin. 6 months after that i developed one in my neck on the left side. during this period...i felt really ill...i had receding gums, stomach problems, tremors, white coated tongue, a whole list of things. for anyone who knows, some of these are classic symptoms of hiv infection. but all tests came back negative. (within correct window periods etc)

last november, i discovered another large lymph node, by my collar bone (sub-clavicular) upon examination by a GP, they found another (axillary) by my arm pit. these nodes were larger, and palpable. during this time period i lost 5kgs very rapidly. i was worried again about HIV due to condom breaking incident. BNH basicly told me that i had a possiblity of cancer, HIV or TB. my blood labs were normal, apart from a slight nutrition deficiency. chest x ray showed no TB. so i was certain i must have HIV. results again negative. had biopsy on clavicular node. came back normal. my nodes are still swollen, but apart from that i am feeling normal...except for periods of EXTREME fatigue.

obviously all of this has been mildly stressful...especially the conflicting diagnoses from different Drs. and im sure anxiety has got mixed up in all this.

i went back to the dr to complain of my still swollen nodes and continued fatigue, and she ( a new one) seemed to think that i had no problems accept uninterrupted sleep, and sent me on my way with 30 lorazepam.

just wonder if anyones got any thoughts on this? thanks in advance!

[yumidesign]

where are you and where are the doctors you have been seeing?

[monkeycircus]

im in bangkok.

i have seen....specialists in BNH (they were the ones who told me i had either cancer, TB, or HIV)

i have seen....specialists in Vejithani (lad prao, where i live) they also mentioned those possiblilities, but also that it could be 'nothing serious'

i have seen ....specialists in Chulalungkorn (where the biopsy was performed)

i have had extensive HIV testing at the red cross....

like i said, now im feeling ok...just faituged. and confused!

[PeaceBlondie]

Not to quibble over semantics, but you have had lots of tests and diagnoses. Several doctors have said what you do not have; you apparently do not have HIV.

I would try other doctors. BKK is far from perfect. I gave up on BKK and got cured in Chiang Mai

[Sheryl]

I assume these were specialists in infectious disease?

Any fever, either initially, intermittently or now?

Blood counts normal? (ne elevation of white count, no anemia?)

The biopsy was because they were concerned it might be lymphoma, cancer if the lymph nodes, but thsi has apparently been ruled out.

The initial presentation sounds much like mononucleuosis but with duration over a year, that rules it out.

I am not sure from what you see if we can consider TB lymophadenitis to have been completely rules out, it can be hard to diagnose. But I am sure docs at Chukla would have considered this.

Other possibility to consider is chronic fatigue sysndrome, but to meet the diagnostoc criteria for that would need to have at least 3 of the following in addition to the enlarghed lymoh nodes:

Impaired short-term memory severe enough to substantially reduce occupational, educational, social, or personal activities

Sore throat

Low-grade fever

Muscle pain

Abdominal pain

Multijoint pain without joint swelling or tenderness (arthralgia)

Headaches that are new in type, pattern, or severity

Unrefreshing sleep

Postexertional malaise lasting > 24 h

Cognitive difficulties (especially with concentrating and sleeping)

A particular featuire of CFS is extreme exhaustion after any tyope of physical exertion or exercise. It is basically a diagnosis of exclusion.

Even if CFS seems to fit, should still be sure to rule out all other possibilities, epsecially since there is little available in the way of treatment for CFS so far.

I think best thing I can suggest is that you consult Dr. Henry Wilde at Bumrungrad (yes, a frang licensed to practice medicine in Thailand!) He is a senior Professor at Chula and expert in infectious diseases. He does nto have regular hours at Bumrungrad but appointment can be arrabnged on request and your case certainly sounds like it merits it. Go to this website and click on "request appontment"under his name, or call Bumrungrad.

http://www.bumrungrad.com/overseas-medical...r-a-doctor.aspx

Bring all your test results with you.

Good luck and I'd be interested to know the outcome.

if he is unable to find an infectious cause ask him about the possibility of CFS.

[monkeycircus]

wow...cheryl....can i just say thanks so much for your advice and information....that is far and away more than i expected from my posting...

i have seen loads of different drs....and thats been part of the confusion...apart from the hiv/cancer/tb.....which they all mentioned, the opinions have varied massively - so i have been walking around either feeling like death is imminent, or that i just need some sleep....

i ruled out those 3 anyway, thank god....i was thinking of CFS myself...the only other symptom which really applies is the disrupted sleep....i dont know....ill be sure to follow up with this reccomendation cheryl, and thansk again for taking the time to help me!

[Sheryl]

Thanyaburimac kindly drew my attention to the fact that Dr. Henry Wilde also has practioce at Bangkok Nursing Home Hospital (BNH), and unlike Bumrungrad his hours there are regular: Mondays 8 AM - 9 AM and Wednesdays 3 - 4 PM. So that may be the easiest way to get in to see him.

http://www.bnhhospital.com/en/findadoctor.aspx

[jfchandler]

Just to bring some update to this thread:

Dr. Wilde appears to have moved on from both BNH and Bumrungrad... I no longer see him listed in the MD directory on either hospital's web site...

And a quick web search using his name didn't find any new listing for him at any other hospitals around the area...

[Tolley]

Dont let the doctors fob you off.

There is something obviously wrong because healthy people don't have those symptoms.

Good luck and persevere til you get an answer.

[Sheryl]

The thread is 2 years old. We never got an update from the OP but as he's still active on the forum I would guess he's recovered from whatever it was...?