Need Help - NO Diagnosis

[tootsie7]

Hope someone can help!In june of 2006 (1wk after camping trip in PA) my husband developed swollen lymphnodes in the neck and grion.GP said probable infection-treated w/antibiotics.Nodes got bigger,sent to ENT. ENT sent for CBC,CT scan and FNA.CBC=normal,CT Scan=generalized lymphadenopathy,FNA of neck=NSF,FNA of R inguinal node=monotonous small lymphoid population.Based on FNA referred to surgeon to remove 1 node from neck, L and R inguinal nodes.Biopsy of all 3 came back benign lymphnodes.July 10,3 days after sx woke up with softball size swelling on both hips.Surgeon said normal seromas.It is now November 2006 and my husband is tired all the time, in pain (lower back and legs) all the time and has edema in his lower back,chest,flanks,abdomen and hips.So much edema pants dont fit,can only where basketball shorts and sweatpants.He is also on disability cannot work.He has seen 4 rheumatoligosts,2 oncologists/hematologists,1 immunologist,1 infectious dz dr,1 ENT and 2 surgeons.Has had CT Scans,MRI's,venous doppler study,x-rays,muscle biopsy,tons of bloodwork.Supposably there is no cancer.All autoimmune testing is normal.The latest MRI and CT Scan picked up a 1cm lesion on the liver, so he is being referred to a GI Dr.CT Scan also showed atelectais at L lung base and lingula.The muscle/facsia/skin biopsy showed normal muscle,Fascia IgM +2,C3D +1 granular deposit,epidermal basement memebrane, Skin showed C3D +3 granular deposit,epidermal basement memebrane.Infectious dz test showed toxoplasmosis IgM -, IgG 3.30H and equivocal EBV.Other blood abnormalities are Albumin 5.42H, CO2 32.6H, Potassium 5.4H, Calcium 10.6H, Ionized Calcium 5.37H, Cholesterol(total) 207H, Phosphorus 4.9H, Triglycerides 341H, Platlet Ct 415H and MPV 7.2L.Labwork pending is a urine calcium and kidney function.Parathyriod Hormone is also normal. To much info - tryed to sum it up.We have about 150 pages of labwork and other tests.Drs dont know what to do - want him to go to pain management, he declined because he wants to get better so now the wont even prescibe pain meds.He also wanted to be tested for parasites and toxic exposure - Dr declined.Any suggestions would be helpful.Thank you for your time.

[lexi3699]

not sure where to start.
I am a 28yr old femal who has 3 small kids,in the past 4yrs or so i have had symptoms come and go but the past yr has been by far the worst I am suffering day to day with multiple symptoms that can be crippling.I am adopted but just recently found my birthmom who informed me that cancer is very BIG in there family her being one of them!
I have had raynauds since i was 16yrs old due to a eating disorder that i suffered for 10yrs!
I am better that way but its almost like i am shutting down physically
     My symptoms are as follows:
Lowere back pain 2yrs ago slight buldge disk
raynauds-worseing
carpol tunnel
headaches lasting 2days
menstral bleeding that has clots
pressure pain-feels like i have a head in my canal,during 2days of menstral cycle
varicose veins removed
leg numbness
feet pain feels like there is lumps on the bottoms and sometimes a stabbing pain in toes which wakes me
nose sores skin prblems which are now leaving scares
birthmark changing that is on the buttock that i feel pressure
another mole on my back that is going to be removed
leg weakness-feels like i just ran a marathon
weird episodes that sounds like seazures (birthmom has)
had eeg showed no seizure activity(my doc says still sounds like seizures though)
Im sure there is more things but its really taking a toll on my life i have a family to take care of and a marriage that is becoming affected by all this i am at the frusterating point right now where i dont know what else to do
If anyone has been there done that any insight to this would be of great help 4 me
Thanks to all who take the time to read my short novel!!1

[just don]

Sounds ALL too familiar.  You can contact me for my personal story!!  saramy 'at' ptcnet.net    replacing the at with the proper a for e-mail ,,,this is to prevent spammers.
  merry Christmas--just don--

[MLWTR]

Just wondered about the possibility of a tick-borne disease (there are a good many different types). Some of those can cause substantial joint pain and joint swelling. Might be worth looking into which types are prevalent in the area in which you were camping. You've probably considered this long since, but I figured I would suggest it just in case.

Hope your husband feels better soon.

[Kevin Pho, MD]

It will be difficult to come up with something without examination that the other doctors haven't already considered.  Clearly, there has been a comprehensive workup with many lab tests and imaging studies.  The good news is that if there was a major disease like cancer, it likely would have shown up already.

You can discuss the tests you are considering with another opinion.  Parasites can be considered, as well as an echocardiogram to evaluate the heart (a lowered heart function can lead to fluid buildup).  

If the pain continues despite a negative workup, a referral to a pain management can be considered.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_